Monday, February 19, 2007

The Medical Side

The same ultrasound that revealed the gender and identical nature of our twins also informed us that one of our boys has a rare heart defect. Since this news, we have been researching and information-gathering like crazy. The timing of this discovery and the blizzardy snowfall worked as a great team, because Scott and I were both off work for two days and could faithfully process this information.

Hypoplastic Left Heart Syndrome is a very rare condition in which essentially one half of the heart is not working. Previous to two decades ago, the mortality rate of babies with this disorder was near 100%. We learned through a special visit to Children's Hospital on Tues (after the initial ultra sound on Monday) that treatment has become far more successful in recent years. We will be meeting Tuesday of this week with a surgeon here in Columbus, who will most likely preside over our baby's 3 surgeries (we have researched Cleveland Clinic, Philadelphia, L.A., and Detroit - but this guy here at Children's is top notch - WHAT A BLESSING!). You can read more about him at http://www.columbuschildrens.org/GD/Templates/Pages/Childrens/Heart/HeartShortContent.aspx?page=1834&gclid=CLiMjpnZu4oCFQ30JAodpS0suQ
We expect it will bring us great peace to hear from him in person and get a more grounded feel for what our experience will be like.

A nuts-and-bolts description of what will happen is this: The twin with the heart problem will immediately be taken to Riverside Hospital's ICU upon birth and stablized. From there, he will be transported to Children's. Scott and I (and the other twin going back and forth) will stay at Children's for about two weeks to be with Duncan (that is a temporary name possibility to replace the heartless title of "Baby A"). The first surgery happens during that time. Then, we take Duncan home and hopefully have a regular life until 4-6 months of age. Then, Duncan has his next and biggest open heart surgery. This is the most high-risk for his survival. There is 85% success in this surgery. Then, he lives a normal life until age 2, when he has his last surgery ultimately designed to reroute the blood from his heart to serve his body. We have been told that, aside from limitations to really vigorous physical activity (he probably won't be in the Olympics), he will be a very average boy.

As for the rest of the pregnancy itself, we will be setting up ultra sounds every two weeks and echo's probably monthly to monitor the growth and distribution of weight in both babies (regardless of the heart problem, the identical nature of the twins means there is higher risk for an inbalance in nutrients and amniotic fluid, so that is the reason for the frequent check-ins).

I have spoken with a couple mothers of children with this same disorder, and have received really uplifting messages from both: their kids are developing well and have survived the three surgeries - progressing with flying colors. We are sure there are stories on the other end of that spectrum, but we are not yet ready to hear them... for now, we need to be positive.

For more information about this heart condition click here. http://www.americanheart.org/presenter.jhtml?identifier=1353

1 comment:

ArtCricket said...

Hi! Glad to see you blogging, i'll put it in my favorites. Love to you, babies, Jan and fam!
Beth Akins