Little Al's heart defect
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Well, it is not the news you would expect to hear, nor the news I wish to be telling.
During a chance ultrasound Holly had the morning of 7-8-2004 to check the baby's
size, we discovered a heart defect. The next afternoon, we met with a specialist who
confirmed it.
Hypoplastic Left Heart Syndrome...improper development of the left side of the heart.
This syndrome occurs in 3 out of every 10,000 births with no known cause. Your
heart consists of 4 chambers, 2 on each side. With this, the baby will only have 2
chambers that work. Depending on the extent and other problems he may have, we
will have up to 3 options to choose from.
1 - do nothing and he will not survive past a few weeks (NOT AN OPTION FOR US!!!)
2 - he may need a heart transplant - 25% of babies never receive a donor heart in
time, of those that do the success rate is 80%, but he will live the rest of his live in
fear of organ rejection and always taking medication to avoid that.
3 - the Norwood procedure, this was developed 25 years ago at the University of
Michigan, it involves 3 surgeries over the next 3 years. It allows the baby to survive
using only 2 chambers. The first surgery would be within a few days of birth, 2nd in 4
to 6 months and 3rd between 1 & 3 years of age.
The specialist highly recommended that we go to U of M and have the surgeries
done, it could be done in Des Moines but they only perform 2 to 5 a year. U of M is
the highest rated in the country, they perform over 100 yearly with a success rate of
88% for the 1st surgery and over 99% for the 2nd & 3rd.
We will be heading to U of M Tuesday July 13th to deliver there and have the baby
ready for surgery. We should be home, baring no problems, in 3 or 4 weeks. I will try
to keep all updated.
Here is also a link with more info about HLHS.
http://www.hlhsinfo.homestead.com/
Thanks to all for your support!
During a chance ultrasound Holly had the morning of 7-8-2004 to check the baby's
size, we discovered a heart defect. The next afternoon, we met with a specialist who
confirmed it.
Hypoplastic Left Heart Syndrome...improper development of the left side of the heart.
This syndrome occurs in 3 out of every 10,000 births with no known cause. Your
heart consists of 4 chambers, 2 on each side. With this, the baby will only have 2
chambers that work. Depending on the extent and other problems he may have, we
will have up to 3 options to choose from.
1 - do nothing and he will not survive past a few weeks (NOT AN OPTION FOR US!!!)
2 - he may need a heart transplant - 25% of babies never receive a donor heart in
time, of those that do the success rate is 80%, but he will live the rest of his live in
fear of organ rejection and always taking medication to avoid that.
3 - the Norwood procedure, this was developed 25 years ago at the University of
Michigan, it involves 3 surgeries over the next 3 years. It allows the baby to survive
using only 2 chambers. The first surgery would be within a few days of birth, 2nd in 4
to 6 months and 3rd between 1 & 3 years of age.
The specialist highly recommended that we go to U of M and have the surgeries
done, it could be done in Des Moines but they only perform 2 to 5 a year. U of M is
the highest rated in the country, they perform over 100 yearly with a success rate of
88% for the 1st surgery and over 99% for the 2nd & 3rd.
We will be heading to U of M Tuesday July 13th to deliver there and have the baby
ready for surgery. We should be home, baring no problems, in 3 or 4 weeks. I will try
to keep all updated.
Here is also a link with more info about HLHS.
http://www.hlhsinfo.homestead.com/
Thanks to all for your support!