Tetralogy of Fallot (ToF, Tet)
From Iceland to Boston
I'm from Iceland. I am the mother of a boy, Ásgeir Valur, who was born with a heart defect called Tetralogy of Fallot. During the pregnancy we also found out he only had one kidney. But luckily, the kidney has never been a problem. It works fine, as it should. We found about the heart defect when I was 7 months into the pregnancy and it was quite a coincidence that it was discovered then, because it wasn‘t seen in 20 weeks sonar, nor 25th week sonar (which I had because of the doctor wanted to be sure there was only one kidney there). But I‘m glad it was discovered during the pregnancy because then we had two months to prepare for what was coming. Most parents get the news after their baby is born.
He was taken with c-section (after his heart rate dropped during birth) the 11th of February and he was taken immediately to the newborn ICU. But I knew that would happen. His father went with him but I saw him 2 hours later. He was christened the day after his birth. When he was two days old he got a Blaloc-Taussig shunt in Landspitalinn (The hospital of Reykjavik, Iceland) and he spent his first three weeks there. The shunt was successful and we could take him home. For the next 7 months he got home-nurse vising us three times a week and in July-August (2004) we had a very difficult 6 weeks as he refused to drink anything. He didn‘t want his milk and the feeding was really a struggle. But we survived. I‘m lucky he was my first child as I didn‘t have any comparison of how it was to have a healthy child.
In September his cardiologist decided it was time to prepare for the big operation and we had one month to make the passport and everything else ready. The 29th of September me, my husband and son met the doctor on the airport and took of to Boston. We were lucky as my mother and my mother-in-law had decided to buy their own tickets to Boston to be with us for support. It was good to have their support when we was abroad. We didn‘t have to have any financial concerns as the government paid the flight for me, my husband and son, the stay at the hotel and the hospital bill. I don‘t think a can complain about high taxes again!
The flight took about 6 hours, and my sons sO2 dropped to 62% during the flight. I was a bit worried but then I decided to look more on my child than the machine, because he was happy playing with the oxygen mask! The trip from the airport to the hospital was the fastest one through airport I‘ve ever had. We had our passport checked inside the airplane, then a few guards took us the shortest way through the airport straight into an ambulance. We were at the hospital with our son in his hospital bed 45 minutes after the plane landed. That was fast! We didn‘t have to wait for our luggage because we had been told, only to take handbags with us. I thought it was crazy to go to another country for 2 ½ weeks with only clothes in our handbags, and a lot of the luggage was our son‘s! Toys, clothes, bottles, diapers (for the flight) and all the stuff that baby needs! The most problem was finding the right milk formula he would drink because the one he was used to drink didn‘t exist in Boston. The painkillers were also different. He had Tylenol at the hospital for painkillers, but we were used to give him Parasupp. There was lot of other little things, like that. Nurses in Iceland tell us not to microwave the milk for babies, but it was the only option to heat the milk at the hospital. But those little things didn‘t bother us too much, we just learnt new ways, and the staff at the hospital was very nice and helpful. We felt like our son was in the best hands.
We stayed at the hotel across the street so it only took us 2 minutes to get to the hospital. We switch places in spending the night at the hospital with our son. And the whole time he was sleeping by the Icelandic clock, which meant that he thought it was morning at 4:30 a.m.
The day after we arrived to Boston (the 30th of September) he had catheterization (it‘s very hard for me to remember this word!), which was performed by Dr. Armsby and it was very successful. This was on Thursday and we were lucky that he was allowed to spend the weekend at the hotel. He had a littlebit fever, but nothing serious. His father took the most amazing photo of him at the hotel with the hospitalband around his leg. We call this photo "Go Red Socks" because he looks like a supporter of a team and while we were in Boston Red Socks won the World Series Championship.
The Tuesday the 5th of October he had the big operation, which was performed by Del Nido. The operation got delayed by few hours, but we kept in contact with our family and friends through his blog, which we tried to update currently. However, everybody in Iceland had forgotten to tell his great grandmother that the operation got delayed and she was really really nervous for his behalf. She though something must have gotten wrong, but that was not the case. The operation was very successful, even more successful than anybody thought. His cardiologist had expected that he would have had several surgeries while growing, and few catheterizations but in fact he has only had one catheterization since then and no other surgery. The orginal plan was to put some Gore-Tex patch inside to widen his pulmonary artery, but luckily the surgeon could use living tissue from my son‘s heart instead!
The first time I saw him after the operation, I really didn‘t notice all the tubes and stuff, what I saw, was his beautiful pink skin. He had never been so pink before. Most other people would probably have noticed the tubes, but I didn‘t. He was in the heart ICU until Friday, then he was moved into 6 East (which I believe, has moved to the 8th floor by now... ). We had still another culture shock on the ICU. In Iceland, you are not allowed to go into the ICU if you are wearing Fleese sweater, and no shoes or other outdoor clothes. Children (up to 16 years old) where not allowed to visit the newborn ICU in Iceland. My husband brother who was 15 years old when our son was born, was not allowed to see him until he got home from the new born ICU. Here, we could would in the ICU in our Fleese sweaters, in our outdoor shoes and everything! We were so surprised by that. But after we got over the culture shock we found out that the staff at the ICU was really nice and they did really care. We felt like our son was in the best hands.
On 6 East we got a one person room, with our son‘s hospital bed, lazyboy and TV. That was luxury. I don‘t recall of having a one person room in a hospital before. Usually, you have to share the room with 2-5 persons! But it was good to have this private room, I think we got it because our son was waking up in the middle of the night thinking it was morning (he was the whole time by the Icelandic clock). The first night we had been in a two person‘s room and our son and the other baby kept each other awake.
In 6 East, we kept getting this good service by the people, and when we noticed that he didn‘t want to sleep in his bed, we spoke to the nurses, and they agreed with us to leave him always alone in the bed, if they needed to take his blood, or do something (he didn‘t like), he was always taken into another room, which made the bed his safeplace. I really liked that. He was also terrified of the X-rays so when he had had X-rays or several bloodworks done, we used to buy him an icecream. It worked surprisingly well, because the icecream seemed to make him forget the pain. (Luckily, they had icecream in the cafeteria!). He is not afraid of doctors after this stay, infact, he likes doctors very much.
We stayed on the Children‘s hospital until the 15th of October (which was Friday). We left the hospital in the afternoon and got to the airport. I think the flight was in the evening, but due to time difference, we landed in Iceland early Saturday morning. The grandmothers had left two days earlier (which was our original departure date, but the departure was delayed by two days, because our son had a little fluid around his heart, but when we left we got Lasix with our which he had to take for a week or so), so when we came home, they were waiting at our home with breakfast ready for us. That was nice.
It is difficult to have ones child in a hospital and even more difficult to have the child in a hospital in another country, but the doctors, the nurses and all the other staff, made our stay as pleasant as possible. I really want to return to Boston someday, and then go there as a tourist, and I hope I can take my son to visit Children‘s hospital, so I can show him the place, he had his lifechanging surgery.
He is now 6 years old, he is very happy boy having a totally different life, than expected. He practises swimming three times a week, he takes dancing lessons and plays piano. Just the things you expect a normal child to do. His scar is almost invisible, so he doesn‘t have to worry about people staring at him when he goes swimming.
--- S. Andrea Ásgeirsdóttir