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Floor’s daughter has Down syndrome: ‘I don’t see her as’ different ‘or’ sick ”

“After a carefree pregnancy, I gave birth to Annabel on May 20, 2020. My second child with my husband Eugene, together we already have two daughter Lisa. As Eugene is from South Africa, we live there most of the year, where he runs three branches of his photography and electronics business. The rest of the time we live in the Netherlands. When I found out I was pregnant again, Eugene and I immediately started fantasizing. Would it be a girl again? We did not want a NIPT test that could detect any deviations. We would not have done that with Lisa either. We love our children no matter what. We would never terminate a pregnancy.

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Annabel

The two ultrasounds I got at three months and twenty weeks of pregnancy in South Africa looked neat. Everything went well with the baby. It was a girl and she was growing properly. All her organs passed ‘the inspection’. Although I was confident that everything was going well, the extra confirmation was nice. In the meantime, I already started planning for my delivery in the Netherlands. As with Lisa, I also wanted to give birth to Annabel in my own country. Especially since we live in South Africa about seventy kilometers from the nearest hospital and I wanted to be close to my family.

And then came corona. Despite the low contamination rate in South Africa at the time, rumors soon spread that the borders would close. As soon as I could, I traveled with Lisa to the Netherlands. Eugene had to make arrangements for his business first. With a lot of luck, he was able to join a repatriation flight to the Netherlands during the lockdown. Just in time, because he first had to go into quarantine for two weeks and another two weeks after that, Annabel’s delivery arrived at the hospital. She was there within an hour and a quarter. The moment I got her in my arms, it was love at first sight. She was so beautiful and immediately drank well to the breast.

Uncertainty

I didn’t see anything striking about her. Neither did the pediatrician, who checked her from head to toe. Annabel was completely healthy, but because I had given birth so quickly, we had to stay in the hospital for another twelve hours to be sure. In between, another pediatrician came by. She also wanted to check Annabel. Suddenly this pediatrician was talking about a solid line in Annabel’s palm. That could indicate a syndrome – she didn’t say which syndrome – but she didn’t have to.

The same was true of the extra space between Annabel’s big and adjacent toes of both feet. It was possible they were symptoms of an abnormality, but it might as well mean nothing. Annabel’s eyes were still swollen from childbirth. If that had gone they could say more. In fact, nothing was clear. The pediatrician said she wanted to monitor Annabel’s development and reschedule after four weeks. Within half a day we were suddenly allowed to go home with Annabel. That was so crazy.

Maternity week

During the maternity week, Annabel drank very well and she also grew well. Sometimes we thought we saw her, but very often we didn’t. In any case, the two maternity nurses who took turns after a few days saw nothing strange about her. Yet I was not reassured.

When the midwife came by after four days, I shared my concerns. I looked up online what the symptoms could mean. It all indicated Down’s syndrome. Perhaps the pediatrician was thinking about that? Everything went just so well with Annabel. Did we really have to remain unsure whether she had it or not for four weeks? According to the midwife, that was not necessary. We could also have it tested through a blood test, then we would have the results within a few days.

Blood test

We decided to do the investigation. Three days later the pediatrician called to see if we could come by the same day. She had said beforehand that she would not report the results by phone. So I had no idea which way it would go. Whatever result we got, my husband and I had come to terms with it. Since we noticed that Annabel’s eye corners were also slightly raised, we were prepared for the test to reveal Down syndrome. Somehow we had hopes that it wasn’t. Or that Annabel would have a mild form, especially since she didn’t have the most common features such as a thick tongue or a missing nose bone.

Once in the hospital, the pediatrician immediately opened the conversation. “She’s got it,” she said. No ‘hello, how are you doing?’, But bam, immediately the news.

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Stream of information

It took a while for it to reach me. It was only when I saw Eugene listening with great concentration that I realized: our daughter has Down syndrome. I immediately had a lot of questions. What did it mean for Annabel’s health? How much care would she need? How would it develop?

The pediatrician explained that it differed per child. Fifty to seventy percent of children with Down syndrome, for example, have a heart defect, Annabel does not, it turned out later. It was explained which studies would follow and what the care program looked like. We immediately started physiotherapy and speech therapy and we also got appointments with the cardiologist and ophthalmologist. It was a lot of information for such an emotional moment.

Step-by-step

After the conversation, Eugene and I held each other and told each other that everything was going to be fine. Then we looked at Annabel and we realized how happy we were with her. I had worn her for nine months and she was all part of us. Although we were quite emotional and mainly wondered what the future would look like, we soon realized that we had to look at it step by step. Why should we fear such a big change? If only we could give the girls what they needed, we would be happy.

Pride

Annabel is now six months old and things are still going very well. I can’t imagine life without her. To me she’s just our daughter, I don’t see her as ‘different’ or ‘sick’. When the pediatric cardiologist once asked whether our oldest daughter is healthy, I realized that she is medically labeled as sick. Of course, it is true that we can run into many medical problems, but to me Annabel is not a sick child.

There are bound to be difficult times, but we also don’t want to get ahead of ourselves and be lived by anxiety. Motherhood requires a lot of patience and perseverance anyway; keep going when you’re tired, stay soft when you’re through it, be present. That won’t be any different with Annabel. By looking at Annabel with love, confidence, pride and courage yourself, others around us will too. No doubt she will teach us a lot, surprise us and steal our hearts. She is already doing that. ”

This article is in Kek Mama 15-2020.

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