The first time we went to Maternal Fetal Group in Nashville is a day that I will never forget. It is stuck in my head, like a bad dream, and every time you try to go back to sleep, it replays in your mind. I honestly thought we would go there, get a cool sonogram picture and be told there was nothing wrong and nothing to worry about and I would continue my pregnancy care at BACH. But obviously that’s not what happened.
When we were told about the CPC’s in Wendy’s brain, I wasn’t too concerned. They are fairly common findings in ultrasounds and usually disappear on their own, causing no problem with the baby. Very rarely are they a marker for something more serious. I had an ultrasound at 22 weeks at BACH on a Tuesday. I had an appointment that Thursday to see the midwife, just a routine check up. They did everything they normally did at my appointment on Thursday, but when we got ready to leave, the midwife said, “They found something in the ultrasound.” She explained about CPC’s and gave us a print out on them. She said we could repeat the ultrasound at BACH or we could go to a specialist in Nashville. Zed wanted to see a specialist. The midwife kept assuring me that it was nothing to worry about and she would see me at my next appointment. As we left BACH, I wasn’t worried. I assumed that since they waited 2 days to tell me, instead of as soon as the ultrasound was done, that it honestly was common and nothing to be concerned about.
I got home and did what every mother would do. I googled it. And I looked up the specialists we would be seeing. Reading about the cysts on the internet was comforting and frightening. Some websites calmed my fears and others added fuel to the fire. Luckily, Maternal Fetal Group made and appointment with me the very next week.
When we pulled up, we saw they valeted your car for you. This of course was an issue for us because Zed was toting a gun and didn’t want to leave it in the car but didn’t want to take it in either because he didn’t have his carry permit at the time. I remember thinking what a cool place it was and wishing I was going to a nice office like that instead of the hospital on post.
I filled out paperwork and went back for an ultrasound. The tech was really nice and made me feel comfortable. After that is when I met Dr. Mayor-Lynn for the first time. She asked us to come into her office after she had looked over the scans and then came in and done a quick ultrasound for herself. She told us the CPC’s were still present but what worried her most was Wendy’s heart. She saw a build up of fluid around it. She drew us pictures, explained that if it was a genetic anomaly that it was most likely Trisomy 13 and that it was kind of late in the pregnancy to have an abortion if something did come back abnormal, if we even wanted further testing at all. Before we had gone, I told Zed I did not want an amniocentesis, that it carried too much risk, but once we were sitting in that office, I knew my choice would affect my child’s care. We had the amnio because if we had not, we would have went back to BACH and Wendy’s abnormalities would not have been noted until after birth and then she would have had to go through all the genetic testing on her tiny body and the thought of her having spinal taps and continuous testings at such a young age makes me cringe. Dr. Mayor-Lynn said she preformed amnios all the time and was skilled at doing so. I think Zed was more scared than I was. I was sore afterward but it wasn’t a huge deal.
Fast forward to the next Monday…. Zed was calling constantly to see if the FISH results were in. That’s preliminary testing that checks the most common chromosomes for abnormalities and usually if the FISH results are normal, then everything is fine. Wendy’s FISH results were fine, so we didn’t worry about it anymore. Then came our next appointment at MFG and they said something was wrong but they didn’t know what. All they knew was that it was her 7th chromosome and more testing needed to be done.
If you google problems with the 7th chromosome, one of the first things you see is the word leukemia. When I thought of leukemia, I immediately mentioned cord blood banking to Zed, because that’s one of the main things they advertise. However, after researching, I found there are many diseases treatable by the stem cells in the cord blood. Treatable Diseases We also banked Wendy’s cord tissue. This is a less known process, but with the technology out there today and with Wendy having a genetic issue, we figured it couldn’t hurt to save it. What is cord tissue?
Some people say this was a waste of money. (Yes, it cost a little over $3,000 for the initial collection, transportation, and first year of banking and it costs $275 a year.) However, people have also disagreed with me about other things, such as giving Wendy medication daily. But what these people who disagree and says it doesn’t work don’t understand is the fact that doctors and medicine have saved my baby’s life. We would much rather have it and never need it, than need it and not have it. People with “healthy” children tend to not understand, but almost every special needs parent I have talked to, said they desperately wish they had done it.