Scott was born one week before Christmas, 1990 and was diagnosed within 3 hours of birth as having the following Heart Defects:
We had no idea before he was born that he had heart defects, in fact the only way they caught it was that he was born with a slightly elevated temperature, so they took x-rays of his lungs to rule out any fluid in his lungs. He started to turn blue, so they put him in an oxygen tent, looked at the x-rays, and quickly determined what the problem was. I give full credit to the wonderful Family Practice doctor I had (and still use) for being so quick to see that there was a problem, making the correct diagnosis and immediately starting treatment to stabilize Scott. Within 10 hours after he was born, Scott was on the way via ambulance to a hospital 4 hours away from our hometown. One of the worst things I have had to live through was seeing my newborn son, whom I had only held once, leaving the hospital without me.
The Medical College of Georgia, in Augusta, has a first class team of pediatric cardiologists and surgeons. Scott had surgery the next day, and received a Right Blalock-Tassug shunt. In non-medical language, what they did was to take one of the blood vessels that would normally take blood to Scott's right arm and plug it into his pulmonary artery, so that was the blood going to his lungs. Now, remember, a newborn's heart is about the size of a walnut, and the blood vessels we are talking about are teeny tiny (a few times the size of a human hair). So you can see why this is pretty intensive stuff! The surgery went remarkably well, and even though they had to go back in his other side a week later and ligate (clamp off) his Patent Ductus Arteriosis (the small tube that takes blood to the lungs while the baby is in-utero), he was out of Neonatal ICU and on the way home in 10 days.
Scott was monitored closely by his local pediatrician, and at age 2 it was determined that he needed further surgery. Extensive research was done by the doctors at MCG, and it was decided that a bidirectional Glenn Shunt would offer Scott the best prognosis. He had this surgery, which is basically the first half of a Fontan procedure, done at age 2. They cut the superior Vena Cava off of his heart and plugged it into his pulmonary artery. Thus, all the blood from the upper part of his body went directly to his lungs, then to his heart. The doctors told us that we could expect Scott to be in the hospital for at least 2 weeks, probably longer. He was out in 10 days. The kid is amazing.
| While we were in Augusta, we stayed at the Ronald McDonald House. I can't say enough about how wonderful it was to have a family atmosphere to come back to after a long day at the hospital. The people there are so caring, and everyone is in the same "boat" so to speak. Hearing about other sick children helped me put Scott's condition in perspective. |
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The shunt held Scott stable for another 2.5 years, during which he grew, but continued to get more and more "blue", and his exercise tolerance went down. More research was done, and it was determined that the best course for Scott was for him to have the remainder of the Fontan procedure done. It is fairly risky surgery, and I certainly had many second thoughts and sleepless nights before the "big day". Rather than cutting the inferior Vena Cava off his heart just like they did with the superior Vena Cava, they created a tunnel through his atrium using cow pericardium. So, all the blood coming from the lower bart of his body gets taken through this tunnel and right back out of his heart to his lungs. Now, all of Scott's blood goes to his lungs first, then his heart. Because of the way he is "plumbed", he has in effect a 2 chamber heart (there is a big hole between his atriums). Here's a picture of the different operations that Scott has had.
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The surgery went well, but it was lengthy, and when they finally let us in to
PICU to see him, I was just so relieved that he had MADE IT through the
surgery... I really didn't even see any of the myriad of tubes and wires coming
out of his chest.. all I saw was that he was ALIVE!! He had a bit of a rough
time in PICU, he was actually in shock for a while when they tried to take him
off the drugs a bit too fast.
He ended up in PICU for 10 days, and the total hospital stay was 2 weeks. Once he got off the respirator, he really got better very rapidly. 10 days after the surgery, he was the terror of the hallways on the tricycle. |
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Scott at age 10 |
Today, Scott is a normal-looking 13 year old. He is able to run and keep up with his classmates, for the most part. He does get short of breath from time to time, but with a short rest, he's off and going again! The intent all along, by the doctors, Scott's teachers and me, has been to give him a normal quality life. I think we've succeeded very well, so far!! |
After I became aware of CHD's, I started donating blood on a regular basis. There is a tremendous need for blood and blood products, and I figure I owe quite a bit to some "unseen strangers" who were generous enough to share part of themselves so that my son could live. Click here to read an article in the local paper about Scott and the need for blood donations.
Since my exposure to the area of Congenital Heart Defects (CHD's), it's become obvious to me that the general public is unaware of how common these defects are. There is also an increasing need for research funding to help find the cause and eventually a prevention method for CHD's. Support for families that have children with CHD's is also very important. I belong to several online listservs (email groups) which provide support for one another while dealing with children who have CHD's. Four of the members of the PDHeart group helped me write an article about CHD's. Mr. Harry R. Bakken describes what CHD's are , and what is being done in the research area towards finding the cause and a future "cure". Then, one of the mothers on the PDHeart listserv will tell you about the emotional rollercoaster she went on with her son Lacy and his CHD. Two members of the PDHeart listserv, who are Adults with CHD (an ACHD'er as they call themselves) will tell us their side of the story - what it's like to have a heart defect when you reach adulthood . One of the list members wrote a wonderful letter recently to another parent on the list that was worried about her child... it expresses the feelings of the families on the list very well. I've included it here as a general letter to any family with CHD kids. Finally, I'll add some resources for parents and families with children who have CHD's.
I could not have made it through all the surgery's, hospital stays, and the intense emotional strain without the support of my family, both off and on the net. I've had several people ask me how I made it through the time while Scott was in surgery... So, I thought about it, and here is a list of things that helped me get through all these procedures. These things worked for me, they may or may not work for others.
If you have a child with a heart problem similar to Scott's, or if you just
want to talk to
someone who has "been there"... please feel free to Email me. I am always glad
to meet other parents with "special heart" kids. :)
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This Congenital Heart Disease RingSurf site belongs to Scott's Heart Page . Click Here To Join The CHD Webring |
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Sue K. Dove sdove@friendlycity.net
This Page designed by Sue Dove, last modified 3/12/2004