The scariest words I’ve ever heard in my entire life were “We will find a way to fix your baby.” And here’s how I heard them:
My fiancé and I found out we were expecting on Nov 2nd 2010. On Nov 21st we had our first ultra sound and were told our baby had a thick nucal fold. We were told all kinds of things could be wrong with our baby from Downs syndrome to Edwards syndrome. We were told he might not live to be a year old and his life would be horrible and painful for that year. We were referred to a genetic counselor. She suggested we do a fetal heart echo based on heart problems on both sides our family. We went on Jan 31st to a fetal cardiologist. I could tell right away that something was wrong as there was no blood flow going to the bottom left chamber of the heart. So the tech got the doctor, he made doctor noises then tells us “You child does have a significant heart defect, let’s go talk about it in another room.” Everyone knows “the other room” is scary. So as the tech leads us to the other room she says “We will find a way to fix your baby.” What do you mean “find a way”? You don’t know how to fix him? This is that serious? By then my fiancé and I were in tears, I mean sobbing, can’t hardly breath tears (well, me anyway, fiancé crying quietly). As we were waiting for the doctor to come in a nurse comes in and says he’s been pulled into emergency surgery. I’m thinking “You’ve got to be kidding me!! So now I have to wait who knows how long, possible hours to hear what’s “wrong” with our baby?” Fortunately, he was only gone about 30 minutes-talk about a long 30 minutes though. He told us our baby had critical aortic stenosis developing into hypo plastic left heart syndrome. We were devastated, as we thought this was just another appointment and we never dreamed something could REALLY be “wrong” with our baby. Our doctor told us about an experimental surgery in Boston that has had success in helping the valves open to prevent hlhs. Of course we jumped at that. So Boston called us on Tuesday, the next day, to “screen” us to see if we were candidates for the surgery. Told us on Wednesday we were candidates (yay!!). We flew to Boston on Thursday, the day after one of their biggest snow storms on record, lots of tests on Friday and surgery on Monday. I have to say I felt God’s peace on surgery day; we knew how many hundreds of people were praying for us that day. It helped that my Mom, Dad and Mother in law were there with us too. The surgery was a success!! The aortic valve was nice and open and had good blood flow and no leakage!! We went home on Wednesday and we were followed very closely by our cardiologist, who also worked very closely with our Boston team (a blessing not everyone gets to enjoy I hear). Everything was progressing nicely. John William, by this time we knew he was a boy and we named him after both of his Grandfathers, still had severe aortic stenosis BUT it was NOT developing into hypo plastic left heart syndrome!! My fiancé and I felt lead by God to get married just days after the surgery, Feb 26th, so we could welcome JW into this world as a traditional family. In May we went to Boston to have John William, Ellianna Grace Foundation paid for our housing (thank you), and JW was born on May 20th. He had a balloon dilation of his aortic valve at 4 days old and a balloon dilation of his aortic and mitral valve at 2 1/2 weeks old. We were able to come home to South Carolina 5 weeks after he was born!! What a great day that was!! We feel very blessed that JW has not had to have open heart surgery and is doing so well. We are still followed closely by our local cardiologist and he works closely with our Boston cardiologist. We are so thankful for the families who have been here, done this before us. Without you all, John William wouldn’t be where he is today. And praise be to our God for the mercy and faithfulness He has shown our family, particularly JW. God has blessed us so much, from the success of our surgery to the meeting of wonderful people through this journey. Would we have chosen this path for ourselves? Of course not, but you learn to depend on God like never before. Our story is still developing but we have a brighter future because of the pioneers before us, the support groups behind us and the Lord above us!!
Funny side note-4 days after JW was born the last mound of snow melted from that snow storm.