January 24, 2009

Friends -

I do not know where to start on this email and I would rather not be typing it at all but you are the closest people to Melissa and I and you need to know that our son is going to have a tough road ahead.

Melissa had a regularly scheduled ultrasound on Wednesday that showed an "abnormal 4 chamber view" of the heart. We were prescribed to meet with the specialists at Evanston NW Hospital, where there are cardiac specialists for inutero analysis. Unfortunately, we were given some bad news.

Baby Smith has what is known as Hypoplastic Left Heart Syndrome (HLHS) a rare congenital disease. Essentially this means the left side of his heart has not developed.

The Doctors explained the options as:

-Terminate the pregnancy
-3 part open heart surgical procedure
-Heart Transplant

Melissa and I are going forward with the surgeries option as it will give our son the best chance for a "normal" life. Terminating the pregnancy is not an option we are exploring and the Heart transplant has too many variables and is riskier in newborns. A transplant may be necessary later in life however.

The surgeries are known as the Norwood Procedure. It is a series of three surgeries with the first taking place in the first week of life. The second at 4-6 months and the third at 35 lbs. The Norwood Procedure has an 80% success rate from the first surgery. A very high percentage of those kids have normal brain and cognitive development. The only limitation would be constant heart monitoring and his inability to "stress" the heart for continued periods of time.

Our son is gong to need fight hard for the first couple of years. Children's Memorial in Chicago and Children's Memorial of Milwaukee are the two logical options for us. Boston Hospital and University of Michigan may also be options. I am going to research the success rates of all. Chicago and Milwaukee both have Ronald McDonald houses that we will explore staying at that are right next to both hospitals because the first and second surgeries could keep him in the hospital for awhile.

The bright side is that we found this out before delivery so our son will be born at a location that is prepared for this type of birth giving him the best chance. Other good news is that the baby is not currently in distress. He is happy getting everything he needs from Melissa. He just wont be able to sustain himself outside of the womb without this surgery.

Sorry to drop this on you in an email. Melissa and I are unfortunately not in a position to tell each of you this news individually as right now we are having a very difficult time emotionally but we know we will get through this. We are praying for strength in ourselves and for the strength of our son who will be born in less than two months.

I know that this is difficult to read as you are close to us. Right now we want your thoughts and your prayers and some support if we call on you. Please dont feel like you have to call and dont feel bad if you dont. We know that you support us. Melissa and I are strong in our faith, we believe that if God brought us to it, He will bring us through it.

David & Melissa