Ethan’s Heart Story
| Told by his mother Heather.
Diagnosis: Tetralogy of Fallot  My husband and I had a long history of infertility so just getting pregnant was a huge miracle for us. When we found out that we were having twins, we were thrilled to be getting “two for the price of one!” Of course, when I really thought about it I was terrified of how I was going to be able to handle two infants. Our first daughter was a high maintenance baby so I was just sure that God would send us two easy ones this time. At 18 weeks we went in for the big ultrasound to find out if they were boys, girls, or one of each. We were so excited because I spent the whole first trimester fearing something would happen and we would lose the pregnancy. This was supposed to be a special day of celebration for us but turned out to be one of the hardest days of my life. All the radiologist could tell us at that appointment was that there was a huge problem with the little boy’s heart (we had boy/girl twins) and he probably had Down ’s syndrome. He then said he would give us some “time to grieve” and stepped out of the room. That statement hit me like a ton of bricks. How final, how defeating those words were. Everyone we knew was calling to find out how the ultrasound went and I just let the calls go to voicemail. I wasn’t even sure I knew how I felt yet so I did not want to talk. That night I decided that no matter what the diagnosis was, I was going to hope and pray for the best and that I loved this little one even more now that I “knew” a little more about him. I mean, I loved my babies but something about knowing his challenges made me protective of him and determined to do the best I could for him. We had a fetal echocardiogram 3 weeks later and it was determined that he had Tetralogy of Fallot. Not the worst diagnosis ever but surely not the best case scenario. Thankfully his sister’s heart was just fine. Now we had a diagnosis and we felt a little more knowledgeable and like we had a game plan. We were told that he would have a heart catheterization immediately after he was born and that surgery would soon follow. They said he would be born blue and that he most likely would not breathe too well on his own. They also said that he probably didn’t have Down’s but probably DiGeorge syndrome. Scary news but we were comforted by the fact that we were in Houston at one of the best children’s hospitals in the country. Then more complications arose. I went into preterm labor at 23 weeks and was admitted to the hospital. The Neonatologists thought possibly the little girl would live (with many complications) if they were born then but they probably wouldn’t even try to resuscitate little Ethan because he really had no chance of living. After freaking out and crying all night in Labor and Delivery. I again, by the grace of God, found the determination to do whatever it took to not have these babies until Ethan could live. I was flat on my back, no shower or bathroom priviledges, for the next 9 weeks. As we passed the milestones (25 weeks, 28 weeks and 30 weeks) we were more encouraged that little Ethan would survive. At 32 weeks, 3 days my water broke and the twins were born 10 hours later. Ethan weighed 3 lbs. 8 oz. and his sister weighed 3 lbs. 15 oz. Ethan was not nearly as “blue” as predicted and was breathing on his own at 3 days old. We eventually found out too that he did not have Down’s or DiGeorge syndrome. God has been doing one miracle after another since little Ethan was conceived. Don’t get me wrong, Ethan definitely has a serious heart defect but he has done so much better than those first dark days predicted. Ethan came home from the NICU after 8 weeks (1 day after his due date) and at 3 ½ months, has yet to have his first surgery or catheterization. We are able to wait until he gets a little bigger and stronger. Through out this whole process there have been days when I just was not sure I could handle everything. But an old friend reminded me that God chose me to be Ethan’s mother. I surely do not think I am strong enough to do all this but it appears that God does. So if he chose me, I am sure he will give me the strength (and sanity) to get through this too! |
~Heather, July 2009 |