I'm writing this to not only get out all my feelings about this whole situation, but maybe I can help someone else at some point who is going through the same thing. There isn't a lot of info out there about cystic hygroma and what treatment is like. Even though the dr tells us it's quite common and relatively easy to cure.
Here is our story...
I received a phone call from my midwife at work. My original "plan" for my pregnancy was having a midwife, delivering in Kitchener, and doing it naturally. Boy did that NOT work out at all!! I ended up having 2 OB's, delivering in Hamilton, and NEEDING those drugs! Luckily at this point, I can look back on it and laugh now.
Anyways, my 20 week ultrasound revelead something on the baby's neck. I remember when I was at the ultrasound appt, I was looking on the screen. Everything said normal, except NECK - said see below, and I couldn't see the notes made on that part.
The midwife said it was a branchial cleft cyst, not to worry, but was going to refer to Hamilton just to double check and make sure. We went to Hamilton the next week for another ultrasound. After the us we went to the clinic to discuss the results with the dr. They gave us a pink pamphlet with all this info about genetic disorders, terminating pregnancies, and so on. I didn't think I needed to read it, but I browsed through it while we were waiting. Finally, got in to talk to the genetic counsellor. She adivsed us that our baby has cystic hygroma. The majority of babies (70%) with this also have some sort of chromosome abnormality (down syndrome, etc) and we may want to terminate our pregnancy. She also explained the chances of him reaching full term where slim. She was telling me I was going to loose my baby. I remember dry heaving in the bathroom I was crying so hard. We had an amnio done that same day and would have preliminary results by the end of the week. With full results a couple weeks later.
They also had us meet a social worker to make sure we would be able to handle things once we got home. I got a dr's note to have the next 3 weeks off as I dealt with things. I only took three days. I sat at home by myself and was just too depressed. I would sit in the bathroom downstairs and cry, so that my husband wouldn't hear me. We had just started to decorate the nursery and I didn't even want to go in there. I wasn't even sure if we would ever meet this baby.
We got negative results from the fish test by friday. The amnio was also negative for everything. We had genetic screening done on all the genes in our baby as well as our genes. Everything came back normal. More tests for noonan's syndrome and some other syndromes all came back normal. An ultrasound on his heart to see defects also came back normal. He was a healthy boy except for the cysts. What a roller coaster ride, waiting out all these results! We are SO happy to have a wonderful support system that got us through when we were at our lowest points.
We had weekly ultrasounds in Hamilton and the cysts weren't growing but baby was developing normally and was a good size. From 20 weeks until he was born we were making trips to Hamilton on a weekly basis. Thank God work was co-operative and understanding with all my time off! During this time I went through a lot of emotions. I was pissed off this was happening to us. You see so many people have healthy babies.
Some people smoke and drink and still have healthy babies. Some people don`t even want to have their baby, some are willing to give their baby away! Some even abort a perfectly healthy baby because of the timing alone. I never realized how precious they really are!!!! As friends, family and co-workers started hearing about our situation, I started hearing the stories that people don't tell you unless you are going through something shitty. Then you realize even worse situations happen everyday and we should be grateful this is all he has. I also believe so strongly that everything happens for a reason.
I believe this happened to us, because God knew we could handle it. It also made us stronger and I realized how important and strong my husband is. I realized I can count on him in the worst of times. You realize who is truly there for you, and who is supportive and who really cares.
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