Dealing with Operations

• Atrial Septal Defect
• Derek's Story
• Eileen's Heart Operation
• Grandma's Diary - Part I
• Grandma's Diary - Part II
• Grandma's Diary - Part III
• Hearts Pounding, One Heart Waiting, Quiet (Heart Poem)
• Coarctation of the Aorta and HLHS
• Heart Murmur
• Jonah's Story
• Keisha's Heart Surgery
• Son with Shone's Syndrome
• Reminiscing
• Shone's Syndrome
• Hypo-Plastic Left Heart Syndrome-1
• Hypo-Plastic Left Heart Styndrome-2
• Son of a Pediatrician

Atrial Septal Defect

My name is Helen and my son Kevin was diagnosed with an ASD (atrial septal defect) when he was nine months old (September, 1994). I distinctly remember that first visit to the pediatric cardiologist and my intense dismay upon hearing the news that Kevin was indeed a friend of the department, confirming a three year relationship to monitor his congenital heart defect. There was a chance that the hole would close on its own and that surgery would not be required. Kevin was otherwise a very active, growing and healthy baby!

For three years we were hopeful (and basically in denial!) that it would indeed close on its own despite the consistent reports to the contrary cited at each six month visit. Alas, the day came when the word "surgery" presented itself with full force! A date was set for April 25, 1997. Kevin was almost 3.5 years at the time. During the three months prior to the surgery, I "surfed the net" and located an abundance of valuable information. I've listed the internet addresses on the last page. Children's Hospital offers a wonderful web page. I even found a surgeon's chat page for helpful explanations, and I discovered a family in Georgia whose son went through the same experience.... we still correspond today!

We all attended the pre-op testing and preschool program at Children's Hospital the day before surgery which we found to be very helpful in easing the "fear of the unknown." We met all the key people who would be involved with Kevin's well-being pre and post-surgery. Children's Hospital maintains the highest regard for the emotional needs of the parents and child helping in every way possible to alleviate the stress and strain of the situation at hand. Because of this great care and teaching provided by Children's Hospital, we were so well prepared as parents and as a family. On the actual day of the scheduled surgery we were very calm and determined for success! It was helpful to Kevin, who searched our faces and body language for signs of distress, to see optimism and strength in us!

The most difficult time for us was the separation in the pre-surgery prep room. Kevin did not respond immediately to the medication and he struggled when they separated him from us. They assured us that he will not remember the incident but he still talks about that today! Once we moved into the waiting area we were somewhat relieved to see so many people experiencing similar anxieties (strength comes in numbers!). The liaison nurse was so helpful and frequently relayed key information throughout the four hour surgery. I found that the time passed quickly when I had something to do with my hands. I brought a hand sewing project to help pass the time and ease my tension. I mentally processed each piece of news as a step successfully completed (trying not to predict the future!). That combination of mental alertness and busyness worked well for me.

When they performed the surgery, they discovered a second ASD and they had to perform a modified Warden procedure (reconstructing the Superior Vena Cava). We were fortunate to have the surgery performed when we did! At last the time came to feel the first flood of relief. We were so well prepared by the hospital staff that when we saw Kevin in the CICU for the first time, it wasn't quite as alarming as we had anticipated. He was conscious and talking to us.... we were so overjoyed to see him alive!! The hospital staff presented no limitations on us, as parents, to be with Kevin at all stages of post-surgery The "dorm" accommodations for parents in the CICU were great. The participation of the parents on the recovery floor (6 EAST wing of the cardiac floor) was strongly encouraged, which eased my feelings of helplessness.

Kevin had a wonderful experience as a patient at Children's Hospital. The child-life coordinator, Beth, was so friendly and helpful. Kevin loved her and the playroom. Kevin was discharged from Children's Hospital in April, 1997. We are now celebrating one year of good health and strong growth, a definite marked improvement from pre-surgery age.

We recently returned to Children's Hospital to visit Beth and the playroom. Kevin has strong, good memories of his experience. We will treasure this experience as one that gave Kevin a new life! We are fortunate to have the opportunity to record our experience in the Family Experience Journal!

Top of Page

Derek's Story

This will be Dereks' 4th open heart surgery....we are almost too calm... having been through 15 procedures and knowing this is not the last just makes you feel very humble...life is very precious and each day with him is a true blessing...he is very brave and very active... he shows no signs whatsoever of a heart and lung problem, he is facing this surgery this morning without any signs of being frightened....the best advice I can give anyone is to let their child do what they feel they can do... they will let you know when they are tired or need a break, you needn't tell them anything their own bodies are telling them anyway.

Derek is 7 now. His name means "leader of men" and lead he shall.

Top of Page

Eileen's Heart Operation

This book is about what happened to Eileen when she came to Children's Hospital of Boston for her heart operation. Through Eileen, you will be able to find out her fears and feelings about her heart surgery and her hospitalization. It will help you know what will happen to you when you have your heart operation.

Eileen was born with a heart defect. Her parents told her that her doctor wanted her to go to the hospital to have her heart fixed. Eileen hoped that after her operation she will be able to run and to play like her friends do. Eileen was scared about going to the hospital, but it helped Eileen to know that her parents would be with her when she goes to the hospital for her heart operation. So Eileen packed her favorite toys, her toothbrush and some of her clothes and went to the hospital with her parents.

Eileen's first stop at the hospital was in the admissions office where her parents answered many questions. Eileen got a bracelet with her name on it, so everyone would know who she was. Then Eileen went into a special room and had some blood taken out of her arm with a needle. The person who took her blood told her that it was all right to say "ouch" when things hurt but she needed to stay very still. Eileen was told that she would get other needles while she was in the hospital. Eileen didn't like that idea but she was told that some medicine had to be given that way.

Eileen's parents took her up to the second floor of the hospital to have a chest x-ray done. Her mom described it as taking a picture of her chest with a special camera. That didn't hurt at all.

Next Eileen went up to the seventh floor to have an electrocardiogram or EKG done. That didn't hurt either. The person doing the EKG put some cream on her chest. That felt funny and cold!

Now it was time to go to Division 35 to meet her nurses and to see her room where she will be staying. There were many nurses and doctors around doing tests. Eileen can help them by telling them what scares her. Eileen was real glad to see other children around that she could play with.

When the nurses and doctors weren't doing any tests on her, Eileen was able to go into the play room. She met Katherine, the activity therapist, she was very nice. There were many toys and games to play. Eileen felt safe in the playroom. She knew nothing bad could happen to her in the playroom. That was a big rule. Eileen liked to play with the other children. There was even a fish tank in the playroom.

Eileen's primary nurse, Susan, took her blood pressure with a blood pressure cuff which fits tight around her arm for a few seconds. She listened to Eileen's heart and lungs with a stethoscope. Eileen got her temperature taken with a funny looking thermometer. Susan then asked Eileen and her parents many questions.

Eileen's primary nurse explained to her and her family about her heart surgery. She used a doll to demonstrate where her incision would be and where she would have IV's and tubes. Eileen was encouraged to ask questions. Eileen was very interested in knowing what everything was on the doll.

The surgeons who would perform the operation came to see Eileen. They talked to Eileen and her family about the heart surgery. They answered all her parents questions. Eileen wasn't afraid to ask them questions because she knew that they wanted to help her get better.

The anesthesiologist came to visit Eileen. He is the doctor that puts Eileen to sleep during the surgery so she won't feel any pain. The anesthesiologist promised to wake her up when her heart surgery was all over. He would order some medicine to make her a little sleepy.

The night before surgery, Eileen and her parents went over to the intensive care unit, Division 85, for a tour. This would help them become more familiar with the sights and sounds in the ICU. Eileen first noticed the monitors that show the heart beats. It made a loud beeping noise with a funny wavy line.

Eileen saw that some children in the ICU had many tubes and bottles. The nurse explained that the tiny tube in the child's nose was used to feed her until she was more awake and able to take foods by mouth. Several intravenous lines or "IV's" were also used to feed her and to give her pain medicines. Eileen saw a tube in the little girl's chest, which was attached to a square box. Susan explained to Eileen and her family that after a few days the tubes would be taken out when she was doing better.

While Eileen would be in the ICU, she wouldn't be able to go into the bathroom, so there would be a tube which would drain her urine from her bladder. When she was feeling better, Eileen could use the bedpan or walk into the bathroom.

Susan told Eileen that her parents would be able to go down to the "holding area" of the operating room when she went for surgery. Eileen was very happy about that because then she wouldn't be so scared. Eileen would also be able to take her favorite doll or toy down with her as well.

On the day of Eileen's surgery, she was not allowed to eat or drink anything. She was given a medication that would make her sleepy. Her parents carried her down to the holding area.

In the holding area of the operating room, the nurse took her vital signs: blood pressure, heart rate, respiratory rate and temperature. The surgeons who were doing the operation came to see Eileen. The surgeons were wearing funny scrub suits. They wore masks over their mouths and noses.

The anesthesiologist that Eileen saw the day before helped her to get very sleepy. Before she knew it, Eileen woke up in the intensive care unit, her heart operation was over. She remembered all the sights and sounds that she heard in the ICU when she went for her tour. There were many nurses and doctors around. Eileen was very happy to see her mom and dad at her bedside. Her parents only stayed for a short time because they wanted her to get her rest so that she would get much better.

Eileen was getting stronger every day. One by one the tubes were being removed. She only stayed in the ICU for a few days then she was transferred to Division 35. Eileen was happy to be feeling better.

Eileen was glad to be out of bed and play with the other children. Eileen had to stay in the hospital for a few weeks. Eileen missed her sister and her home but knew that it was very important for her to stay in the hospital until her heart was much stronger. During her stay, Eileen knew she would need many blood tests, chest x-rays, EKG's and echocardiograms. Eileen was encouraged to tell her nurse when she had pain so that they could give her medicine to make the ouch go away.

Eileen used an incentive spirometer to keep her lungs clear from fluid. She received physical therapy to help clear her lungs. The nurse would tap on her back. Eileen didn't like it but it had to be done. She enjoyed blowing bubbles.

Eileen needed to take medicines every day for her heart. Even though some of the medicines didn't taste very good, Eileen still had to take them. Eileen would also have to take some medicines when she was discharged from the hospital.

Before Eileen was discharged from the hospital, the doctors examined her very closely. The doctors wanted to see her in their office in two weeks. Eileen was told that she would have a chest x-ray and EKG done at her doctor's appointment.

A few weeks after Eileen was home, she was able to do her favorite things like her friends. That made Eileen and her parents very happy. She was glad that she had her heart operation. Eileen would always remember all the nurses and doctors that made her feel better and consider them her friends.

Top of Page

Grandma's Diary - Part I

July 14, 1997

"Mom, when you get home from work, take me to the hospital to be checked. I'm in labor and I hurt so bad." (3:15 p.m.). "Mom, meet me and Tara at The Medical Center." (4:30 p.m.). I got to the hospital before they did. Your mom was in labor for what seemed eternity and then the doctor came in (Dr Hooper) and checked her and decided that you were turned the wrong way and that your mom had to have a C-section. (4:10 a.m.). You were brought into this old world at 4:36 a.m. on July 15,1997. Your Aunt Jennifer, Grandmother Betsy (me), Grandfather Joe and Great Grand Mother Betty were in the hall of the hospital to meet you as your were brought out all wrapped up with only your beautiful eyes showing, your greeting into our lives.

You and your mom had a fairly uneventful stay in the hospital and were released to come home on Friday, July 17,1997. We had a few good days until your mom went to the doctor and he discovered that she had an infection from the C-section. Nurses began to come to the house to care for her. You were doing great. The only problem, you would not breast feed. The county health nurse came by on July 23,1997 and examined you and your mom and gave you both a good bill of health. You were eating well and sleeping great for an infant your age.

Tuesday, July 29, 1997

You went for your first check up at the Pediatrician's office (Dr Privott) with your mom and great-great aunt (Sister). I got a call at work from Sister telling me that I needed to meet your mom at the emergency room at Phoenix Regional Hospital because something was wrong with your heart. My mouth went dry and I ran from the office. I got to the emergency room and no one knew who ya'll were or anything about you. The nurse was great and got on the phone to Dr Privott's office and told me that you were still in the office. Thank goodness his office is right next to the hospital and I met ya'll there. It was explained by Dr. Privott that something was wrong with your heart and that you would need to go to the ICU area of Phoenix Regional Hospital until you could be flown (yes, you flew before your mom did) to UAB in Birmingham.

So many tears that we should have dried up (didn't). Your wonderful great aunt Leslie and cousin Beth refused to let us go to Birmingham alone and as soon as the flight team took you away, we went home and packed (for 3 days) and they drove us to Birmingham to be with you. As soon as we found you, wrong directions given by flight physician, the craziness of Birmingham and multiple hospitals, we were told that you had TGA, Transposition of the Great Arteries and that you would need to go to Boston for heart surgery. I said," Boston as in Massachusetts? That is the other side of the world." But that was what they meant. The doctor in Birmingham told us that if you were going to have your heart repaired that Boston Children's hospital was the only place to go because "quite frankly we don't do this surgery well and our babies die." Can't get any more open than that! Another flood of tears.

They kept you in Birmingham for stabilization until Thursday night July 31, 1997 when you were flown to Boston for surgery on Friday August 1,1997 (yes, you got to fly again before your mother did). We got to stay at the Ronald McDonald house Thursday night thanks to a wonderful social worker and the next morning we decided, okay, what do we need (since we only had 3 days worth of clothes)? It was out of the question to drive back home (200 miles) so we found the nearest Walmart and made a list of necessities. Underwear, socks, notebooks, books to read, back pack to carry on the plane, etc.

Our wonderful friend Philip Saffold, had planned to go to Framingham to visit friends for a week and on Thursday, July 31,1997 stopped in Atlanta and picked up Grandfather Joe (he was working in Atlanta). They drove 1,250 miles, all night, and got to Boston about 2 hours before you went to surgery. Leslie drove your mom and me to Atlanta and we flew to Boston. Your poor mom was scared because of you and scared because it was the first time that she had ever flown. The lady sitting next to the mom on the plane was from Miami and was going to visit family in Boston and she and her son told us that they would be praying for you nightly.

Top of Page

Grandma's Diary - Part II

August 1, 1997 (1 AM)

What a place. We felt like we had just "fallen off the turnip truck". Two women alone in a huge city and we had to take a cab. The cab drivers drive like idiots and your mom hid her eyes all the way from the airport to the hospital. When we arrived at the hospital we discovered that we had arrived before you. What was wrong. More tears. We spent the night in chairs in the family room after the clerk gave us a bag of essentials, shampoo, towels, toothbrush, tooth paste, soap, etc. They promised us that they would wake us when you got in and were stabilized but they decided that we needed to sleep worse and did not wake us. Every time a door shut, I woke up and asked if I could see you. Not yet. We finally got to sleep about 4:30 a.m. and a lady came into the family room around 8:00 a.m. and told us that we had to get up, that we could not stay there. At the time we had no where else to go and had not been told anything about the sleeping room for parents. When we met with the social worker she told us that unfortunately the Ronald McDonald house was for cancer patient families only. It was then that we found out about the parents sleeping room and how to go about signing up for a bed.

Operation day. We knew it would be 12:30 p.m. or so before they took you to the operating room, so mom went to Brigham's and Women's Hospital (Harvard Medical School) to have her dressing changed and to have her incision checked. While we were there they asked why we were in Boston and we told them about you. They asked if we had eaten and we told them no, so they sent for two trays of breakfast for us. How thoughtful. We probably would not have thought about eating. Mom, Granddaddy Joe, Philip and I spent the afternoon in the surgical waiting room (your mom sleeping). They have a nurse in the waiting room who stays in touch with the surgical team and she would give us updates on how things were going. You were in surgery about 5-6 hours. Dr Delnido (your surgeon) told us that everything went as expected and that we could see you later that night.

You were sleeping soundly in what looked like spaghetti junction. Tubes and wires were everywhere . You were completely out and will be for several days. Your chest was open (not stitched up) and the incision was covered with what appeared to us to be orange Saran Wrap. We could see the pulse beat of your beautiful little heart through it.

August 2, 1997 - August 3, 1997

Waiting. More of the same, wired and asleep. The hospital offered pagers to family members so that we could get out of the hospital for a few hours each day and they were still able to reach us. We found that this was a necessity even if for an hour to walk, get a meal, etc. We did have one instance when the pager went off and we panicked. We found out that we were paged in error. We were told that your temperature had gone up and that you might have meningitis and were started on an antibiotic in addition to all the other medications.

August 4, 1997

Grandfather Joe was flying back to Atlanta this morning to go to work. Philip came to the hospital at 3:00 p.m. to take us out of the four walls. We rode the T train into the heart of Boston for a good meal. Mom and I were beginning to walk more than we had in a very long time. We needed the exercise. No change.

August 5, 1997

We spent the night at the hospital. We sat and waited. More of the same. Philip came to the hospital at 3:00 p.m. and we ride the train. We meet a friend of Philip's, Sean and he had just finished a book which we promptly took from him. You were the same. MOM BEGINS TO READ A BOOK!!!!

August 6, 1997

Mom finished the book. Since I am an avid reader (and she isn't) I was impressed. We sat and waited. More of the same. Philip came to the hospital at 3:00 p.m. and we rode the train to the heart of Boston again.

The days have begun to blur. You got better, you got worse, got better, got worse. We were told that you had had a cerebral bleed but residual effects would not be known until you were a year or so old and beginning to talk and walk.

Prayers were being said for you all over Georgia (Aunt Jennifer's office held a brief prayer session for you every morning), Alabama, Massachusetts and by every parent in the family room. We had made friends with Erin whose son was sick and we would soon learn that he needed a new heart. We had made friends with a family whose daughter did have a heart transplant. We had made friends with a family whose son died.

Time went on and we waited and waited and waited.

You were getting better and then you decided, maybe you liked it here and took a nosedive and then we cryed and we waited.

August 8, 1997

Aunt Jennifer came to Boston and brought us a few more clothes since we still only had 3 days worth. We had discovered a washer and dryer in the hospital which was a Godsend. You seem to be better so I went out to Framingham with Philip and Jennifer and Mom stayed at the hotel across the street from the hospital. We had found that every so often we needed to get away from the hospital for a night and if we were needed they would call us at the hotel and we could be there in less than 3 minutes.

August 9, 1997

You seemed so much better that we were able to hold you and we cried. This was the first time that we had been able to hold you in 10 days. What a beautiful girl you were in spite of the tubes and lines.

August 10, 1997

You were so much better and alert that it was time for Jennifer and me to consider going home. The thought of leaving you was terrible. Aunt Leslie has decided that your mom didn't need to be in Boston alone so she decided to come up. Mom is all grown up and your mother, but she was still our baby. I hoped I had a job when I returned home.

August 11, 1997

Jennifer and I had to leave today and for her to catch a flight if she could. I did have a confirmed seat on the plane. I arrived in Atlanta at 8:20 p.m. and called your Grandfather Joe and found out that she would be on a "catch" flight due to arrive at 11:00 p.m. We finally got together at 11:10 p.m. and she drove us home to Phenix City. I got to bed at 1:30 a.m.

August 12, 1997

I arrived at work at 8:30 a.m. and asked "Do I still have a job?" I received hugs from everyone and no one said a word other than "How is your granddaughter?"

August 13-21, 1997

Time spent at work, time spent on the phone. I called the hospital at noon and 6 p.m. every day to talk to the nurses. I remarked that UPS had to come off strike in order to deliver our phone bill. The hospital did offer a 1-800 number but when your mom got homesick and called home crying, it was usually on a private pay phone, collect. You were up and down, up and down.

August 22, 1997

Things were looking great. Hopefully you could go to the "well" floor tomorrow, although this was not discussed in your presence because you seemed to love the care you were receiving and wanted to stay in CICU. When I called the nurses at 6:00 p.m. I found that you had already been transferred to the "well" floor. I sat and cried. I couldn't wait for you to come home and I got to hold you again. It had been a long time since arm time.

August 23, 1997

Your mom said that you slept almost all night. She only had to jump up once during the night when you were whimpering. Things were still tense. The nurses wanted your mom to sleep in another room so that she could get some rest but she refused. The antibiotics were still going for the meningitis and would be for probably another week. Things were looking so good that 7 days would be a piece of cake. Your mom just called and she put the phone up to your ear and I got a chance to talk baby talk to you. Your mom said your eyebrows went up each time I said something.

August 24, 1997

I just talked with your mom and you both had a good night. You would be going for another chest x-ray that morning and your mom would take you downstairs in the bassinet. Your last day on the antibiotics would be September 1,1997 so hopefully you would be able to come home September 2 or 3rd depending if you could get the bottle thing down pat for them. You had gotten lazy because of the feeding tube and were essentially having to relearn to suck.

August 25, 1997

You had a big day including physical therapy and trying to eat. You didn't do too well with your morning feeding. I had talked with mom later that afternoon and you drank 2 ounces. Your best yet!!! Tomorrow they planned to take the pacemaker wires out, hopefully the feeding tube if you continued to eat well and you were getting an EKG and chest x-ray. You had better pass them all in flying colors so we could get you home. I could hear you over the phone fussing, not crying, just making little baby fuss noises. It sounded so wonderful, I missed you.

August 26, 1997

You were doing so much better. However, you continued to vomit and were very slow on eating your formula. We did have good news that you had a tentative release date. Go girl.

August 27, 1997

You continued to have trouble eating and were vomiting. The tentative date was still on. We were beginning to make very small plans.

August 28, 1997

It was decided that your vomiting may be due to withdrawals from the methadone and so they resumed it. You were sleeping better, eating better, and not vomiting as much. Our poor drug dependent baby. They would continue to wean the methadone because you could not come home until it was discontinued completely. The release date was still on.

August 29, 1997

Still doing well. You were eating 1.5-2 ounces of formula and were almost back up to your birth weight. (Boy, if they could see you now). The hospital had called to set up home health care as well as physical therapy for you when you returned home.

August 30, 1997

Dr Allen Percy is the neurologist that we were to contact in Birmingham for your follow-up because of the cerebral bleed but we had to get you home first. You were continuing to eat 2 ounces each feeding and you were still vomiting, but not quite as much.

August 31, 1997

Mom stated that the feedings were going good. Grandfather Joe had made plane reservations to go to Boston to get you and Mom. He would leave on Tuesday September 2,1997 and if all was as planned you would be home with us on Wednesday September 3,1997.

September 1, 1997

Preparations were being made. You had your discharge physical this day and you passed it in flying colors. Chest x-rays were being done and blood work. Grandfather Joe was leaving early tomorrow morning from Atlanta to fly up and get ya'll and bring you home.

September 2, 1997

Well, you were coming home. You could leave the hospital but due to flight schedules and such, you would stay until the next day. Grandfather Joe had a hotel room across the street from the hospital but since Mom couldn't warm or store bottles it was decided that it would be better if you stayed one more night. The phone had been ringing off the hook, as if everyone knew you were on the way. Aunt Susan, Rick (a long time friend of ours), Aunt Laurie, even Olan Mills were calling so they could take your picture. I as well as several others, would be holding you tomorrow.

Top of Page

Grandma's Diary - Part III

September 3, 1997

You were home. You seemed to be eating well and we had been unable to detach you from Aunt Jennifer. She felt that since you had been in doors for the past 6 weeks that what you needed was to be walked in the backyard. Tomorrow was your first check-up with Dr. Privott. Then we could really begin to fatten you back up. Today you weighed 8 lb 9 oz and were 23 inches long. Home Health would begin later this week. Mom went to the doctor for her check-up and you had to go to Birmingham to see Dr. Lau for your cardiology check-up.

After several home health visits the nurses told your mom that they could not continue to come and play with you everyday. You were in too good of health for them to continue. Physical therapy came once and decided that their services were not needed.

I don't know what we would have done without the prayers and support of everyone. Your Aunt Leslie had earned a place in your heart and still thinks she is mother #3.

July 16, 1998

You went for your one year check-up with Dr. Lau, the cardiologist, in Birmingham and he was amazed at your health and stated frankly how surprised and pleased he was with your recovery. He also told your mom that we were not to treat you like a "China Doll". He also brought in several of the doctors in the hospital to see your scar. It was almost invisible. We had told Dr. Delnido that we wanted him to sew pretty. He did not even use sutures but closed your chest with a "paste" made of blood and other things. We are going back to Boston for a check-up on August 28,1998. We have made several emergency room trips, rushing to Dr Privott's office, the best pediatrician in the world, and yes maybe we have over reacted on occasion. So what.

To the prettiest girl in the whole wide world, you are worth it. I love you.

Top of Page

Top of Page

Coarctation of the Aorta and HLHS

October 2, 1997 was a beautiful day to go apple picking. It's a tradition with Grandma and Grandpa to go apple picking in October, so they invited Mom to come along. Now Mom had been awoken by contractions that morning but decided to go just the same; after all it was tradition and such a beautiful day at that. The contractions were far apart and not strong, so she thought. No sooner did she get home from apple picking when things started to change. She called Grandma over to be with her, and soon had to call Dad to come home as I was growing impatient!

When Dad got home, they quickly got Mom to the hospital and with in a half hour I made my grand entrance into this world. A little blue but hungry for Mom's milk just the same. We went home without much fan fare, but in a few days, I was getting yellow and tired. Turns out I needed to go to the hospital and have phototherapy for two days. Boy were those lights hot, they made me hot and breathe real fast. Little did we know how significant this was. So my bilirubin came down and we went home.

A few days passed and that's when things got really sticky. It was a regular morning and Mom gave me a bath. Not too long after we went to the kitchen to cook, I needed a diaper change. I wasn't feeling too good and I was getting cold. Mom noticed it when she changed my diaper. I was so mottled and cold that she took my temperature - it was 96*! All of a sudden she got really frantic and tried to get me warm. I wasn't feeling real good at this point. Mom looked into my eyes and said "Don't you die on me!" I didn't know what was happening but I really didn't feel good.

Before I knew it I was in an ambulance and on my way to the hospital. They let Mom and Dad stay right there while they worked on me. They couldn't get an IV line in me but finally did. After blood was drawn they found me to be in severe shock and gave me medicine to help me. Then they called Albany Medical Center to get a transfer team down right away. Up there I had an Echocardiogram which revealed all my problems. I had a coarctation of the aorta and something called Hypoplastic Left Heart Syndrome.

Mom didn't even know that they could do something for this but the doctor said that they could at Boston Children's Hospital and that's where I'd have to go. So I was transferred. Within a day I had my Norwood surgery and boy was Mom in for a surprise. Because they had to do so much work on my heart they left my chest open to let the swelling go down. I had a dressing on my chest like a window bottomed boat! It worked really well though because my chest was closed the next day. Not too long after that I was transferred to the main floor and had to gain weight before I could go home. Mommy and I persevered with breast feeding and bottle feeding and I was able to go home in time for Halloween!

Now because of my heart defect, the surgery necessary to fix everything is in three stages. I just had my second stage or the Glenn procedure done. I had my surgery on 5/15 and my "sats" look good for me to go home 5/20. I still have a headache but not as bad as my first night post-op. Boy was I unhappy. They say it has to do with the increase in blood flow that the surgery does. But hopefully with this change, I'll have a bigger appetite so I eat well and grow big and strong. Right now I'm 23 inches long and weigh 11 pounds, so I have room to grow.

Everyone here at Children's has been so great. We stayed with a hospitality family this time and that has been such a wonderful comfort. The host family is so nice, it's like we are in our own home. Well, they say I'll have to come back in a year or two for the final stage of surgery, the fenestrated Fontan and then I'll be all fixed! Until then, I'll keep growing and growing.

Top of Page

My daughter was a newborn when we learned that she had a "heart murmur". I didn't even know what a heart murmur was when my pediatrician told me. There was not a pediatric cardiologist in our town, so we had to take her to Gainesville- 3 hours away. It was not an emergency situation, but nonetheless, the testing and the outcome was un- nerving.

Now, 8 years later, we have undergone open heart surgery for the heart murmur. She had been tested each year with an EKG and Echo- and each year- the same thing was said- wait and see. We may have to do something at some point- but we're not to that point yet. Through much research and interaction with other people- we found the wonderful Dr's and staff of Boston Children's Hospital. Our treatment and outcome has been great. The VSD has been closed and for all intents and purposes- our Heart saga is over. We feel very fortunate and lucky. We can now go back to Florida for rest and recuperation- and go on with our lives as normal. Our daughter has been a trooper through all of this and is an inspiration for us all.

Top of Page

Jonah was diagnosed with Hypoplastic Left Heart Syndrome at the age of one day old. He had his first surgery ( Stage 1) at three days old. He did very well for a few months, then ended back up in the hospital at about three and a half months old. He contracted some kind of virus.

A few weeks later he ended back up in the hospital again with unexplained fevers. This all boiled down to needing his next surgery to stay well and not get sick every time his immune system was down a little. They then did his Echocardiograms to determine exactly what the next step would be. They then scheduled his surgery to do a Bilateral Bi-directional Glenn Operation. He was very sick going into this surgery. He made it through, then went into cardiac arrest two times after surgery. At that point his Surgeon didn't have much to tell us on what to expect. He mentioned possibly a Heart Transplant. He came through the rest of the way holding his own for almost two weeks in the Intensive Care Unit. Then we were finally transferred to the regular floor here on 6 North. We are now just waiting for him to eat. We will be back when he is about two years old. Hopefully not before that.

I thank Children's Hospital, and especially Dr. Bichell, Dr. Lang, Dr. Chung, and all the wonderful wonderful Nurses. I pray for all these wonderful people every day.

Top of Page

Keisha's Heart Surgery

Today is October 14, 1998 and my granddaughter Keisha is going to have open heart surgery. Her doctor is Dr. Bichell and after having met him both my daughter and I have complete confidence in him. Keisha is four years old and when she was born one of the nurses in Baystate Hospital in Springfield, MA noticed a heart murmur on the day of discharge. Needless to say Keisha was checked out by a specialist Dr. Rowland and he found that Keisha had one small hole in her heart as well as pulmonary stenosis. Her mother, my daughter was told that they would wait until Keisha was four years old to have surgery to fix her heart and Dr. Rowland recommended Boston Children's Hospital because it is the best hospital in the world,

Well, Keisha has now reached the ripe age of four and here we are on our second trip to Boston. At first the doctors thought she would only have to have a catherization and a ballon type procedure to open up the valve. Well after further examination it was determined that her heart problems were much more serious than anticipated. She received a diagnostic catherization where the extent of the damage was revealed. We had to reschedule the surgery, Dr. Bichell explained what the new surgery would entail. At first there was a possibility of canceling again because Keisha has cavities which could cause infection in her heart. The dental staff here checked her out and gave their approval as long as antibiotics were administered. Well all systems are go, the surgery will be taking place today. I must commend the staff here, they have been wonderful to all of us. I have complete confidence in the doctors and look forward to Keisha having a complete recovery. Since the surgery has not been performed I will have to let you know what the results were, but as we all know God takes care of all of His little ones, and Keisha knows how to pray and she loves the Lord. For anyone reading this story, do not worry, there is a God and just put all of your faith and trust in Him. He is a healer, and if you feel like it type your story in here as well. Thank you for this opportunity. God Bless Boston Children's Hospital and its staff.

Sincerely, Grandma

Top of Page

Son with Shone's Syndrome

My son was born 20 years ago with Shone's Syndrome. He was sick all the time. I was always in the emergency room with him with fevers that I could not bring down. I could never get his doctors to believe that there was something wrong with him. Then on Thanksgiving when he was just over a year old, he broke his leg (to this day I do not know how it happened). I took him to the hospital and they said there was no break. So the following day I drove him 60 miles to a different hospital in Anchorage, Alaska where they found that his leg was broken. I went home to get him clothes to come home in, and when I returned there were all of these doctors in his room with equipment I had never seen before. One of the doctors took me out of the room and explained to me that my son had a heart problem. Finally someone believed me- I was so relieved. My parents wanted a second opinion so they flew us to the Sick Children's Hospital in Seattle, Washington, where they found the same problems.

My son's aortic valve was completely closed off and he had grown a very small vein to bypass the obstruction. He also had aortic stenosis, mitral stenosis, aortic and mitral regurgitation, a diastolic and a systolic heart murmur, and a membrane that grew through his aortic valve and was connected to his heart muscles. Also, his valves were bicuspid instead of tricuspid. We flew back to Alaska and they performed the first surgery on his aortic valve. After that he did really well until he was 9, when they had to do open heart surgery to open the valves up more so that the blood could flow through more easily. This surgery was performed in Louisville, Kentucky. The doctors were not sure if it was going to work, but it was worth a try considering that the alternative was to replace the two valves.

My son will be 21 in May and lives a normal happy life in Toronto, Canada. He has his check-ups every year and because of his doctors' wonderful work, his heart condition has remained stable.

Top of Page

Reminiscing

When I was expecting the delivery of my third child, I had no idea that I also would be expecting the lifetime of medical experiences too. My son, Shawn is probably the most trying of my six children but in the same way I can also thank him for challenging both my parenting abilities and my medical know-how. I've had to play many important roles in my life, but never would I think I could have a medical degree without entering one foot into Harvard Medical School. I have had to be a mother, wife, taxi-driver, nutritionist, nurse, school advocate, banker, disciplinarian, and so many other of those little everyday professional jobs that seem undone with no pay. I have had to think of my "payment" being that my son sleeps at home more than in the hospital and that most decisions that are made for him can be made by me. Although a lot of his anger is directed towards me and his siblings, we try the best we can to know that it has to be the hardest job of anyone to walk in his shoes for one day.

Shawn is now 14 years old and bright as any boy can be at his age. He shows no pity for himself and has the stamina of a bull. Sometimes it is his strength that will pull me through the medical situations that we find ourselves in. And now we are in Boston. He hardly has a complaint but at times I find myself crying like a baby about the mess of all this. My son has had a number of tests, reviews, operations, appointments, etc., and still seems to find the way to say, "I am fine. Do you have a Nintendo on this floor?" Now my son is recovering from open-heart bypass surgery with Aortic root and valve replacement. We are in a hospital that is the best in the USA for the past 9 years and on a cardiac wing with unsurpassed experience with these children.

Top of Page

When our daughter was born, she appeared quite healthy. On her sixth day of life, she went into congested heart failure. After an agonizing night at the hospital, we were told she was being transferred to another hospital in Connecticut. At this point, she was intebated and flown by Life Star to the hospital. It was there that we were told she was very, very sick. Her diagnosis was hypoplastic left side of the heart. They recommended that we "let her go" because the quality of life would not be very good. They told us they could not perform surgery on her and if we wanted to pursue surgery we should go to Children's Hospital in Boston. They stabilized her and flew her to Children's Hospital the next morning.

We were very frightened. We were so afraid of losing her. Our primary nurse made all the difference in the world. The doctors and nurses were always honest with us- never giving us false hope but at the same time having us keep our hope. After the team of doctors checked her out several times, they diagnosed her with Shone's Syndrome. Shone's is multiple anomalies with the left side of the heart.

She was extremely sick and they performed her first surgery, a co-arctation, within 36 hours. We were very nervous but we knew this was the only chance she had. We had her in the right place with the best doctors in the world. We prayed a lot. As it turned out, this was only the first surgery of many. Unfortunately, she wasn't able to extubate for several weeks. All the while she was being fed through a nasal tube. When she finally did extubate, she was transferred to a hospital near our home in Connecticut.

After two weeks she came home. Within days, she went into congested heart failure again and ended up back at the hospital in Connecticut. She was intebated and transferred to Children's Hospital in Boston. The doctors decided to repair the ASD- the hole in her heart. Even after that surgery, she still didn't extubate and still couldn't take a feeding orally. A tracheotomy was performed and a G-tube was implanted. We were told she would need "long term care." She was transferred to Franciscan's Children's Hospital. This is a hospital that specializes in long term care and rehabilitation. At this point, we decided to relocate our residence to the Greater Boston Area.

All in all, our daughter was in hospitals for 13 months. She finally came home with 24 hour a day nursing care. She still had a trach, a G-tube, and was hooked up to oxygen on a c-pap machine. She was a medically fragile child.

It was a very long haul. We learned how to give her medications via the G-tube. We learned how to change her G-tube and her tracheotomy tube. We experimented with weaning her off c-pap, oxygen, and her medications. It was a very long process and not always successful. We were very careful with out daughter. When she was discharged from Children's Hospital we were told a common cold or chicken pox could be fatal to her. We were scared.

It wasn't fun having nursing care in our home, but we felt very fortunate to have our daughter in a home environment. We always treated her as if nothing were "wrong" with her. We believe that's what helped her be the person she is today.

When she was one and a half years old, we weaned her off oxygen and put her on compressed air. Just before her second birthday she was decanulated (her trach was removed). Thank God, it was successful. We really felt that she could breathe on her own. It was just a matter of having the doctors believe it. They were concerned to take her "life line" away from her, but agreed to try it within a safe environment- at Children's Hospital. When she was discharged without her trach, I truly felt that she had been reborn. It was a wonderful feeling!

Just before her third birthday, we were told she needed another open heart surgery. This time it was to repair the sub-aorta stenosis. This was the scariest one of all for us. My husband and I discussed not doing it and just enjoy her for as long as she would live, possibly 6 months to one year. But then we decided that it was our responsibility as loving parents to give her every opportunity for life. Surgery was scheduled as soon as possible. We were really nervous in the parent's waiting room. We kept busy by playing Backgammon, Parcheesi, and cards. The most wonderful news was that the surgery was successful and they didn't need to reroute anything or use donor valves. We were elated!

It was astonishing how quickly she recovered and what a difference this surgery made on her life- and ours. From the time she was born she had chronic vomiting and it finally went away. We believe there was a direct relationship between her heart and her stomach. At this point, she still wasn't taking any food or drink orally. All her nutrients went through the G-tube. We continued bringing her to a feeding specialist. Progress was extremely slow. It was hard for her to feel hunger because of the tube feedings.

When she was three and one half years old, the specialist discharged her feeling that she had the skill to eat now. She just needed more practice. Gradually we reduced the tube feedings and started counting calories for everything she ate. She would eat small amounts through the day. She is now 6 years old and loves to eat!

We continue to live in the Boston area and go to Children's Hospital for an annual EKG and ECHO. We don't know what the future may bring, but we love her dearly and will continue to give her every opportunity to enjoy life. She has no restrictions and we treat her the same way we treat her sister. She is very happy and lives a full life.

Top of Page

At four days old my son had gone into cardiac shut down, I almost lost him in my arms on the way to the hospital. I was very scared because I had no idea what was wrong with him. I had him on February 24, 1998 at 4:48 p.m. and it was a really good labor, it was only four hours. I brought him home on Thursday February 26. He seemed like a happy healthy baby. The only thing I noticed with him is he didn't eat very well, he seemed to get tired fast, I asked the doctors about his feeding, but they felt that it was just because he was little, because he was only 5 lbs.. 14 oz.

On Friday February 27 around 11:00 p.m. he became very irritable, he was really cold feeling, so I kept bundling him up, but it didn't seem to make him any warmer. Finally around 4:00 a.m. February 28, we rushed him to the hospital cause he was really struggling to breath and he was cold and yellow color. When we arrived at the hospital they hooked him up to all kinds of machines and started doing all kinds of tests on him. They didn't know what was wrong with him. They thought it might have been upper respiratory problems like maybe pneumonia. After doing chest x-rays they decided to send him to Worcester Memorial to be checked out.

When we arrived in Worcester they told us that he had a really serious heart defect, known as Hypo-Plastic Left Heart Syndrome. We had never heard of it before so we asked the surgeon to explain it to us. He told us that our son had no left side of his heart. He said that we had three options to choose from, they were: 1. bring him home and just let him die, 2. hold him in our arms in the hospital and pull the respirator and hold him until he dies, or 3. send him to Boston Children's Hospital and put him through surgery. After he gave us our options he said he would leave us alone for about ten minutes to let us decide what we wanted to do, then he just walked out of the room!

We were all devastated because we didn't know very much about his heart defect. When he finally arrived back in the room we asked him what were his chances of living if we sent him to Boston, he said he had a 5% chance because his lungs had also been bleeding. We really thought that he didn't have much of a chance so we had the priest come up and baptize him and give him his last rights. After the priest had done all that the doctors told us that he may have a chance to get sent to Boston, so we told them to give him every chance he had.

Around 6:00 p.m. Worcester sent him by ambulance to Boston Children's hospital where he was examined. They did not do his surgery until he was eight days old because he was very critical. His lungs were hemorrhaging, his kidneys were failing, and his liver wasn't functioning. They informed us that his heart problem would require three open heart surgeries. Finally at eight days they went ahead and did his first surgery. It was a long surgery, he went in about 3:00 p.m., and I never got to see him again until 12:30 a.m., the next morning. It was really hard to see him because he was hooked up to so many different machines.

He did pretty good in surgery (especially for being so critical). He had a few problems after surgery like his kidneys wouldn't function, and it took awhile to teach him to eat. He was in the hospital for about 5 1/2 weeks. It was real hard being away from home for so long. He had great care while he was here. His favorite nurse was Renee (from 6 East). Some other favorites were Kara, Tara, and Beth.

He came home on March 30, 1998. It was really nice to finally have him home. He was a happy baby. When you looked at him you couldn't tell that there was anything wrong with him. People couldn't believe he only had half of a heart. He came back in June because he had a blockage in his main aorta. They needed to balloon it. He was only here for about one week, then he was discharged. He did really good after that operation.

Top of Page

Hypo-Plastic Left Heart Syndrome - 2

On July 27,1998 he came in for his second operation (the bi-directional glen). It was very hard to hand him over when it was time. He stared to cry which made it very hard. This surgery lasted about six hours. It was a long wait but they kept us updated when everything was happening.

Around 3:00 p.m. We finally got to go in and see him, it was real hard to see him this time because he was a lot more swollen than the first operation. By the second day he had gotten even puffier cause he wasn't passing the fluids as well as they wanted him to. By three days after the operation he was starting to look like my little son again. By the fourth day he was off the respirator and breathing on his own with a little oxygen.

On Friday he got moved to 6 East around 7:00 p.m. He got discharged on Sunday August 2, around 2:30 p.m.

He ended getting readmitted on Monday August 3, because he was real irritable so we brought him to the doctors and they ran tests and discovered his white blood cells were up. So we brought him to Boston Emergency room around 9:00 p.m., where he was examined. He was real fussy because he didn't feel good and all the doctors kept picking him. Around 1:30 a.m. August 4, we got sent up to 6 East were he was admitted.

Top of Page

Tetrology of Fallot - 1) overriding aorta, 2) right ventricular hypertrophy3) Ventricular septal defect (VSD) 4) pulmonary stenosis (in my son's case Pulmonary atresia absent pulmonary artery). It was my first project as a second year medical student in Pathology.

Never in my wildest dreams would my own child be born with this condition. Of course my wife and I tried to be careful, we had chromosome checked, two fetal Level two ultrasounds at another hospital (no one suggested a fetal echo), and because my wife was a gestational diabetic, she took her insulin and checked her blood sugars 4 times a day. The only concern was that his feet were small compared to the rest of his body.

The first surpass at 37 weeks gestation was that there was no more amniotic fluid so that my wife needed a c-section. My son was "born" kicking and crying birth weight only 5 lbs. My colleague was at the delivery and said that everything looked fine, except for he was a "peanut" and his apgars were 7 and 9. (I thought that he did look kind of blue, but what did I know, I was only the father.)

At 8 am the next morning, my colleague came into our room and suggested that my son had a heart problem, since his oxygenation was low. It really was only 20%, normally it should be 95-100%.

Anyway here I am at Children's hospital, two weeks after his successful surgery. He already has had three chest tubes, and as I am writing this they believe that his v-tach today was due to dig toxicity. I know way too much.

Good luck to everybody. I hope I have gained some sensitivity for my patients in my general Pediatric practice. Thanks for allowing me to share my thoughts. When my son is old enough to type, I hope he can add to this experience.

TOP OF PAGE