On march 21, is World down Syndrome Day. NU.nl speak with the parents of Jordi (1.5) and Rose (23), both of which Down’s syndrome. “Look not only to constraints but also to the possibilities. There are many of us.”
Mandy and Niels Pittens (both 31) are the parents of Jordi (1,5). Shortly after his birth he was very sick, but is now going very well with Jordi.
“It took nine years before Mandy got pregnant by Jordi. She had medical problems and had a gastric bypass: a gastric. Only after they are 50 pounds had fallen off, began a series of hormone treatments. Eventually, she became pregnant. We almost couldn’t believe it!”
The results of the test came as a surprise
“SIP-test we have deliberately chopped off. Down for our families and we were not in a different risk group. During the ultrasounds showed the baby smaller than average, but there was nothing abnormal to see.”
What is the JUST-test?
- In the Netherlands the Non-Invasive Penatale Test (SIP) since april 1, 2017 offered to all pregnant women. The blood is in a laboratory and examined for evidence o.a. the syndrome of Down.
“With 35 weeks got Mandy suddenly contractions. In the hospital she gave birth to our son Jordi, a beautiful baby. Because of the premature birth, he was examined and so arose the suspicion that he has down syndrome. This was confirmed by a chromosoomtest.”
“The rash was not really a surprise. However, the sudden ill Jordi. No one knew why, so we were madly transferred to a more specialised hospital. Our blue cloud was gray-black.”
“Fortunately snapped Jordi on and we were after a number of weeks finally able to return home. To speculation to avoid, posted us a message on social media to our environment light. There we received a very warm response.”
The nature take its course let it go
“That openness we find very important to ignorance about down. Ask us how it is and we explain it to you. Though there are limits: there is sometimes asked whether he ever gets better and some people even find it sad for us. Especially how they agree, while it is never a problem.”
“Just like for all parents is that are happiness for us is paramount”
Mandy and Niels Pittens, parents of Jordi
“We have no regret that we the LITTLE test turned into. Why? This was the only thing we have through the natural way could do. If we ever have a second child than let nature take its course.”
“Now is Jordi a happy toddler who loves to cuddle. He is hearing impaired and has a pair of glasses, but fine. He steps in his own pace. We encourage him where possible in its development. To see the future we positively respond to. Just as it is for all parents is that his happiness is paramount for us is: down syndrome or not.”
Kitty van Tilborg (60) is the mother of Rose (23). She works as a hostess in a restaurant, like to get out and dreams to themselves living.
“I was aware only pregnant on my 36th. My husband and I wanted to wait until his children from a previous marriage were older. I could have an amniocentesis because I in the risk group fell, but beat that because of the consequences for my unborn baby.”
The pediatrician just be on the consequences
“Because I during pregnancy, too little amniotic fluid was found to have, I was initiated. At 34 weeks our daughter Rose was born. A study in the hospital and she was down’s syndrome. I didn’t know what was in store for me, but Rose was very welcome: a matter of life vision.”
“Well, I take it the pediatrician still resent how he told it. He came in with a somber look and she said terrible news, after which he me in 25 years consequences be. Congratulation remained behind, while I just a lovely daughter had gotten!!!”
Down syndrome in the Netherlands
- Estimated that in the Netherlands there are approximately 12.600 people with down’s syndrome.
- According to SIP-consortium did in 2017, 42% of all pregnant women in the Netherlands, the SIP-test. At approximately 3 in 1,000 pregnancies were evidence that the unborn child is down syndrome.
- It is not known or since the SIP test is offered, more births of children with down’s are aborted.
“Rose is my only child and I don’t know better than that this was the beginning. Her first few years she received two severe heart surgeries with significant complications, and she lay much in the hospital. That was many times heavier than the indication of down syndrome. Fortunately, she has survived and she developed within its limitation well.”
“Now is Rose a beautiful young woman and she works with a lot of fun as a hostess in a restaurant and once in two months a day in a fashion store. She loves theater and likes to eat. She takes care of herself: hair, beautiful, lipstickje. It all goes a little slow, but she is living well. Together, We’ll consider the possibility of guided independent living.”
“She takes care of herself: it’s all going a little slow, but she is living”
Kitty van Tilborg, mother of Rose
“Of course, the care for Dandruff. She is vulnerable, and oversees certain things less well, especially emotions. Her father nine years ago, died and it took her considerable effort to have this grief to overcome. She talks about her father in the present tense, as if he were there every day.”
“But it also has something beautiful: Rose is supersociaal, links and humor. The whole circle of friends is in love with her and she has my life in all facets enriched. I have learned that expectations especially something of yourself.”
Take the control in their own hands
“Now you can get the LITTLE test and I think that’s good: everyone has the right to make a choice. Though it would be in my eyes an unfortunate day for our society if there are no children with down more to be born. The world is not perfect and it teaches our value judgments.”
“Other parents, I would advise to at all times control in their own hands, because very hulpverlenend the Netherlands pours itself all over you at the time that your child Down’s syndrome is determined. It is your child and you decide. Also, take the time to make the biscuits-with-mice-feeling. A child is a wonderful thing, and enjoy may, also with a child with down syndrome.”