10.20.10 - The days were extremely long leading up to that Wednesday when we had our first echocardiogram and we met Dr. Cuneo at Hope Children’s Hospital. We had a 9 am appointment and weren’t seen until around 11. During that two hour window I have seen 3 babies less than 6 months old come and go for appointments, numerous pregnant women come and go and that entire time I was wondering why are they here, what is wrong with their hearts? It was one of the longest 2 hours of waiting… little did we know the waiting was just beginning, everywhere after that point we waited and waited to be seen.
When we were called in my heart started racing because I was that much closer to finding out what it was that was wrong, the severity and a lot more than I thought I could handle. The tech did the ultrasound and then the doctor came in to review and examine as well. Then we went in to discuss the diagnosis. It was Hypoplastic Left Heart Syndrome (HLHS as it is commonly known for short). Basically the left part of the baby’s heard is severely underdeveloped or not developed at all. This is important because the left side of the heart is responsible for pumping oxygenated blood to the body. If this condition is left untreated it is fatal for 100% of newborns. The baby may survive a few hours to a few days depending on how quickly a part of the heart that naturally is open in utero closes after birth. We were given a picture of a normal heart and our baby’s heart a full explanation and our options:
· Terminate the pregnancy - legal limit in IL is up to 24 weeks gestation
· Compassionate care – carry the baby to term and then let it die naturally
· Try to repair the circulatory system through a series of 3 open heart surgeries
I could not process any of this, I heard it but could not process. I felt like I had to make a decision right there, like there was no way out, I felt completely hopeless. If it wasn’t for Joe I think I would have died right there. He assured me that we had to think things through, see a second opinion, get all the facts and then make a thoughtful decision.
That day changed my whole life. I realized how much I have taken for granted, how much I complained about the little stuff, how I didn’t realize that I had such a gift at home a gift of a healthy child I took for granted.
We requested that she refer us to another doctor to get a second opinion.
However the bad news did not stop there, that same afternoon we had an appointment at MFM with a genetic counselor to discuss another hard topic, OTHER POSSIBLE COMPLICATIONS. What I didn’t mention is that the ultrasound doctor from last Saturday also found two choroid plexus cyst on both sides of the brain. This is usually common and goes away by the time the baby is born, however if combined with other diagnosis, like HLHS, it could indicate other chromosomal abnormalities, most often Trisomy18, which has a high mortality ratein itself. So they suggested I get an amniocentesis test done, (invasive procedure to take fluid from around the baby to test the chromosomes). This test has risks in itself of miscarriage about 1 in 400. Needless to say we hesitated, but the counselor convinced us that the benefits outweighed the risks. If there were any other chromosomal abnormalities the baby would not even be a candidate for any surgeries and we were left with terminate or have the baby and let it die. Not what you want to hear as an expecting parent. So we went ahead and agreed to the test it was scheduled for the next day. Knowing the results to this test was supposed to make our decision “easier”. It really made it worse. I was dealing with potentially two life threatening conditions for this fragile little child inside me whom I was already feeling moving. Again it was devastating.
10.21.10 – Second opinion with Dr. Gotteiner at Northwestern Memorial Hospital. Another long echo, same diagnosis, same grim news.
That same afternoon – Amniocentesis test at MFM. It actually wasn’t a scary procedure physically but emotionally draining as I didn’t know how my body would react and if there was nothing wrong chromosomally our decision to have the test would be the direct result of a miscarriage. But I did well and then we had to wait a full 2 weeks for the results. It was a loooong 2 weeks.
10.23.10 – Regularly scheduled OB appointment the doctor again talked about all the results of the tests and reassured me that whatever decision we make is good. This is the first OB appointment that my husband attended, there was no need before this. (Obviously he went to all the specialists and tests etc)
10.25.10 – the basic FISH test results come in from amniocentesis test and they are GOOD. Some hope picks up but still waiting for the full lab result.
10.30.10 - Another MFM ultrasound because on the original scan the doctor could not see all the facial features and he though he saw something unusual so he wanted to do a second scan. This time the face looked fine, our little boy is just quite shy and keeps his face covered with his hands.
11.9.10 – Full amnio tests come back all GOOD J. By this time I had almost 3 weeks to do all the research I could possibly find, Joe and I talk heart to heart and we didn’t even need these results to decide to keep the baby and let him fight it out. We decided to do everything in our power to help him fight this battle. But knowing that this will not be an ordinary pregnancy and life for my son is still so devastating, that I have to fight tears every time that I tell people I will have a little boy and they smile and say “ohh how nice, you must be so excited to have one of each” because in my heart I know that I can lose this little one in the blink of an eye. (Here I go again being negative) Everyone keeps saying be POSITIVE, I’m trying I really am.