I am pregnant with a daughter who has Down syndrome
As I write down the title, I have two feelings
First of all, I am of course super happy because I am pregnant. Another feeling I have is fear. Our baby has Down syndrome. Can we handle this and what does it all entail? My name is Rosien, I am 24 years old and my boyfriend Daniël is 28 years old. At the moment I am 26 weeks pregnant with our first child.
At the end of August 2019, we found out that we are going to become mom and dad
What an incredibly cool feeling! It was also quickly apparent that I was pregnant, as I was hanging over the toilet daily and was especially very tired. After weeks of suffering from the well-known pregnancy ailments, we had our 20-week ultrasound. There we were told that we were expecting a girl, but also that there were abnormalities visible in our little girl. The midwife had seen abnormalities in her heart, abnormalities in the brain, and she couldn't find everything properly on the ultrasound. On the way back home, I just cried, blamed myself, and had the most terrible thoughts haunting my mind. For two days I just couldn't enjoy my pregnancy and was filled with tension and fear. I cried a lot during those days. Feeling so powerless as a mother, unable to do anything for your unborn child while you would want to do everything for her. After two days, fortunately, we were able to go to the Isala hospital in Zwolle for an additional ultrasound. Although we had to go there for an unpleasant reason, we did have a good experience with the visit. We had a very nice doctor. This doctor was very clear. He explained exactly what he saw and if he had to make an effort to find something, he would say so. Despite lying there full of tension, he still managed to give some reassurance. Luckily, the doctor could find everything and everything was exactly where it was supposed to be. The fluid in the brain was a bit more than normal and when he saw the heart, he immediately knew what it was. "Your daughter has an AVSD." This means that there is something wrong with the septa between the atria and between the ventricles of the heart. Our daughter has a mild deviation in this. Relieved that he could find everything but on the other hand oh, so exciting concerning the found abnormalities.
After we had the ultrasound, the doctor said that she can be operated on for this
Relieved! And he would measure the fluid in her brain again next time to see if it had increased or decreased. I had mixed feelings about this. It was great that the doctor could find everything and that everything was where it was supposed to be. But it was also so upsetting to hear that your daughter has a heart defect and too much fluid in her brain. Once again, I felt that anxious and tense feeling. We were also asked if we had done a NIPT. We hadn't done this test because we had decided not to terminate our baby regardless. However, the doctor advised us to do it. This heart defect is often associated with children with Down syndrome. “Uhm… Down syndrome, how so? We're both healthy and both still young!?”, was the first thing that went through my mind. After we did the NIPT, I went home in disbelief. In the car, I was filled with all sorts of questions. “Why is this happening to us?” And when I got home, the tears came. For a while, I really struggled with it and started blaming myself. Even though everyone around me said it wasn't my fault, it felt as if I had already failed as a mother. Fortunately, Daniël and I could talk about it very well together and come to terms with it. Whatever the NIPT would reveal, we could handle it. Family and friends would always be there to support us. Our little girl was welcome with us no matter what, and certainly in the family.
On January 2nd, we received the results by phone and indeed, indications for trisomy 21 were found
It meant that our little girl had a 95% chance of being born with Down syndrome. My first thought was: “What a great start to the new year... Please let it be 2021 soon.” Even though we had taken it into account, it was still a bit hard to swallow. Because this did confirm it. It also took a while before it really sank in for us. I was always positive, but this was something I just couldn't think positively about for a moment. I was actually driving myself a bit crazy with all sorts of thoughts: “With Down, she'll look different. She might be bullied later on. She will never get married. We won't become grandparents. What are the chances – if we can have a second child – that he or she will also have it?” You just immediately had all sorts of questions in your head. In such moments, you realize that it's very nice to have friends and family around you who support you, are there for you, and that you as future parents talk about this together. This gave me some peace of mind again and allowed me to enjoy all her karate kicks in my belly more.
On January 13th, another ultrasound was scheduled with the doctor
We had written down all sorts of questions for ourselves that were on our minds. Fortunately, we got clear answers to them, which also gave us extra peace of mind. We also had good news, something we both really needed. The fluid in her brain was no longer too much, so that's good! The doctor also indicated that if we wanted to be 100% sure whether our daughter has Down syndrome, we could do an amniocentesis. We both immediately answered 'no' to this. We didn't want to increase the risk of miscarriage and if the test showed that she definitely has Down syndrome, it wouldn't change the fact that she is welcome and we already love her very much. Even though we now know for 95% and not the full 100%, we just assume that she has it. For the first time since the 20-week ultrasound, we went home feeling good and I was also able to talk about it better myself. I also started looking up families on the internet who have a child with Down syndrome, and then you also read about the difficult aspects of having a child with Down syndrome. They often need a lot of care. But what struck me most was the love these parents have for their child and the love they get back. They all say that they wouldn't miss it for the world.
We had agreed with the doctor that we would like to stay there and under his care
He gives us a nice feeling and clarity. On February 6th, we had another ultrasound. But before this ultrasound, we first had a conversation with the pediatrician. The conversation with the pediatrician was very pleasant and again made clear points regarding the birth, breastfeeding, and the heart. Due to her heart defect, I am a medical case and will also have to give birth in the hospital. She doesn't need to be operated on immediately after birth, but this will happen between 3 and 6 months after birth. The conversation also concluded that we should not worry too much. The pediatrician will also become the doctor of our little girl and if he is on duty when I go into labor, he will be present at the birth. After a pleasant conversation, we also had a good ultrasound. I was very nervous myself, especially whether the doctor would discover more abnormalities besides the heart. I also wondered if the fluid in the brain was still good. But luckily everything was fine! Phew, what a weight is then lifted off your shoulders.
One moment I feel fine, I can talk about it well and also think positively
But there are also moments when I find it very difficult and just don't know anymore. Then that one question pops into my head again: “Why us?” Then I just sit down and have a good cry. I believe that everything happens for a reason and that one day we will understand the reason for her coming to us. I spoke to one family who have a 7-year-old son with Down syndrome. They speak only with praise about him and love him dearly. I hope and am actually quite certain that we will feel the same when our little girl arrives. But at this moment, I still find it very difficult. For me, time cannot move quickly enough. Let it be May soon. Then we can see our miracle, cuddle her, and just hold her tight. Because I am sure that from the first moment we see her, everything will be fine and we will forget our worries. Because it is she who will make us a dad and a mom and whom we are already so proud of. No matter what difficult situations we may face, together with our dear family and friends, we can handle it!
I found it very difficult to write about this and to share it. But I already notice that it gives me a bit of peace. It won't be just one blog, I may keep you updated about our little girl.
See you soon!
RUSSIAN
