Connor, born 2014
At my 20 week ultrasound appointment I found out the gender of my baby and the life changing news. The tech could not see all 4 chambers of the heart. So they referred me to Maine Medical who they told me my son had a CHD but they didn’t know which one so they sent us to a pediatric cardiologist. He is wonderful. He does an ultrasound and echo in hopes of trying to see if he has any luck in getting a full picture of the heart. He sees a lot of things but never the whole picture. It becomes very frustrating not knowing how to prepare for this child. All along the doctor say it is fixable and not to worry. So the PC said after many echoes that it could be a possibility of three different diagnoses. They range from minimal surgery to multiple surgeries.
Well as time goes by and more ultrasounds and echoes pile up the big question was what does this little boy have for a heart. They could only give us hypotheticals as to what to expect.
Connor arrived four weeks early on February 24, 2014. I was at my regular checkup and the doctors said that my levels were up and to go to the maternity ward. I figured they were going to put me on bed rest again for a few days like last time or even for the next two week to get me at a better time for delivery. Come to find out that was not the case. They were taking the baby now. I began freaking out “no, no, no, he has to stay in longer so he has a better chance of making it threw the surgeries”, I cried and yelled. My husband was working and I was alone I called my sister and told her what was happening and she came up from Massachusetts to be with me till he could be with me.
So they got Connor and he looked wonderful, not blue or purple like they were said to us all along. He had a great pink color to him and everything. My husband went to the NICU while they finish up with me. I at last get to see him in the NICU, he looks wonderful. The next day my world comes crashing down.
The doctors say they have good and bad news for me. Good news Connor’s not having surgery. Bad news, he can’t have surgery as there is nothing we can do. What? What do you mean? Connor’s missing some key pieces of his heart. Also, his combination of CHDs is none they had seen before. My heart drops, I cry. I don’t understand this whole time they were telling us they could fix it and now they tell us they can’t fix it. What are we supposed to do now? Love him and cherish him for as long as you have him was their answer. One of the things they were able to do was to put him on medications. The have him on 3 different ones.
Connor’s team of doctors reached out to Boston Children’s and who said they have not see this type of defect either but said there might be one doctor in San Francisco who could help. So we sent out the Connor’s information to him and he got back to us saying they couldn’t help either. The combination of Connor’s defects is rare, so rare that doctors have not seen them before.
Connor is an amazing little boy. He is off one of the medications and has been doing amazingly according to his team of doctors. Everyday is a blessing and we all hope for a long time with him.
Story by Connor’s mom, Gretchen – Maine