The next ten days were, for lack of a better term hard. I cried multiple times everyday leading up to this anticipated fetal echo. Pregnancy hormones plus anticipating horrifying news is a terrible mix. Looking back to these days I feel bad for Matt. He was such a rock for the two of us and I’ll always wish I was more for him.
Finally our appointment has arrived and I remember shaking in the waiting room. Being called back for our turn somehow felt like being swallowed by a hole. The entire echo felt like a blur, but I do remember Matt telling me, “Everything will be okay.” Now this line is important cause unfortunately there will be multiple more times it’s important he tells me this. And girls when you’re old enough to read this know your father knows more than he leads on, so always take his advice….. after you clear it with me.
After the echo we met with a cardiologist from St. Christopher’s Children’s Hospital. No we didn’t pick her, she happened to be employed by the hospital we were receiving our high risk pregnancy care at. She explained what Baby B heart looked like based on what she could see. Now again the girls were still so small so even she had some things up in the air. She explained the surgeries she would need to fix her heart over her lifetime. She explained how she would immediately need to be emergency transported from this hospital to St. Christopher’s. This plan didn’t sound ideal to us knowing these babies would statistically come early, but you do everything and anything for your kids. If I’m being honest though she painted quite the promising picture of how things would go. And how she would live as normal as any other kid would once she completed these “step” open heart surgeries. She assured me that she would make it to birth as my body was providing her with the oxygen and nutrition she needed. We left still scared, I mean open heart surgery and not just one but three! It’s not news you take lightly but we were looking as positive in this situation as we could.
We explained it to close family and friends as best we could until our next echo which could yield more information. However when we talked it over with my mother she suggested we get a second opinion from Children’s Hospital of Philadelphia (CHOP). At first we were both reluctant. Maybe it’s because we didn’t know any better but in actuality it was because I’m not sure we were ready to hear anything more than the fluff this cardiologist from St. Christopher’s fed us. I thought it over, talked it over with Matt, and ultimately we decided to get a second opinion.
During our next checkup we asked the MFM specialist to send our records over to CHOP for a second opinion. This woman.. had the lady balls to start telling me that CHOP was going to ask me to terminate Baby B. That Baby B may not even make it to birth and that if she didnt Baby A wouldn’t make it either…. Now I’m not presuming to know the day this woman had but you should NEVER say something like that to a pregnant woman or to anyone really! I began tearing up, Matt stood up to leave and told her to send the records over and we would just see what they had to say. Matt, well lets just say he was pissed. However now I’m terrified something is going to happen to my girls. Literally checking for movement constantly. Yes I could tell the difference in each baby’s movement. Again Matt assured me Everything would be okay.
I called my regular OBGYN and told her what happened, she agreed we should go to have an evaluation from CHOP. She sent over our records that morning and the next day I got the call from CHOP when we could come to have these 20 week echos and measurement checks.
Boy was that appointment day brutal. My mother had come with us to help us navigate the busy day and help us ask all the questions, cause in these situations it’s easy to get distracted and miss the important things. By the end of the 4 hours of straight ultrasounding I was in so much back pain. Guess one of my girls decided it was a good day to kick and squish some nerves in my back. And our scheduled lunch break was revoked after being so behind on the schedule they wrote up for us. Lucky my husband is the most amazing man and snuck me in some chicken tenders.
They agreed to take on our care from here on out. They had a special delivery unit for us to have the girls at so my family didn’t have to be split up. They gave us the tough news, told us how challenging this experience would be especially since her heart was so complex and unusual. The cardiologist from CHOP gave us a quite similar depiction as the cardiologist from St. Christophers. Ultimately the three step heart surgeries were still going to be a necessity. But if you wanna talk numbers CHOP’s success rates with open heart surgeries was far beyond St. Christophers. (Something we also did not know at the time was St. Chrstophers was about to file for bankruptcy) The fetal doctor briefly asked us about termination. Once my husband shut that down they agreed to not bring it up again. We asked if she would make it to birth and they reassured me I was providing everything she needed right now. We asked how we could be having identical twins but only one with such an abnormal heart. Because genetically there was no known link, they presume it was an abnormality that occurred when the girls eggs split in the whom. All in all I felt like we were in the right place, the best place to give not just Baby B but both my girls the best chances at life.
Are there any other families like ours you may ask. Less than a one percent chance of this happening.. To date I have only heard of one other family, not met any in person. Though I’m sure there are more out there we have yet to meet.
Following My Hearts 