They only discovered that Sam has Achondroplasia. “Until the 20-week ultrasound everything seemed very good. But at 32 weeks of pregnancy we were told that he has achondroplasia, the most common form of dwarf growth.
At first I didn’t know what I heard. In the weeks before his birth I lived in fear. Would the birth go well? What would the consequences be? “
“Fortunately, the birth went well, but since then the studies follow each other: X -rays, checks, blood samples, sleep examination and an MRI. You never know what’s coming.”
“I had no choice but to leave Sam at home.” © Fotovansam
Don’t just pick up
Sam needs extra care due to his condition. “We can’t just pick it up from the box. You always have to hold the neck well. There is a chance of a narrowing in the back of the head or a growth in the back if it is wrong.
That is why it is advice to keep him flat as possible. Even when feeding, taking a bath and during transport in the car. “
Even simple daily routines require more time. “If we go down, I first bring Liz or Sam down and then I run back for the other. We only have one car. Because I work in a village, I do everything on the bike. Sam can’t go in a maxi-cosi, baby carrier or whip.
Recently Stef had to go to work early and my parents were on vacation. Unfortunately, the flat travel cot did not fit in my mother’s car.
I had no choice but to leave Sam at home while I quickly brought Liz to the shelter. I put a note behind the window of the car: “There is another baby in the house.” Very cru, but there was really no other possibility. “
“There is a big difference between 1.30 meters and 1.60 meters with a man.” © Fotovansam
Struggle for medicine
In addition to healthcare at home, Brit, together with six other mothers, is fighting for access to a medicine that can mean a lot. It can make children with achondroplasia up to 30 centimeters larger.
“It’s about much more than length. The drug influences bone growth, creating more space in the body. That means fewer complications, fewer operations, less pain. And above all: more quality of life and self -reliance. There is a big difference between 1.30 meters and 1.60 meters with a man. We weaken sam with a lot of positivity, but it will be on it, but it will be on it, but it will be on it.”
Denise (38) has rare form of dwarfism: ‘Our house has never been adjusted, I just had to save myself’
Biological father
Because Stef turned out to be infertile, Liz and Sam were born thanks to a donor. “That was something he had to learn to live with. Sometimes it remains difficult when people say that the children look like him, but now I really see his traits in Liz ‘way of doing it.
For us it doesn’t matter if he’s the biological father. You can have a biological father who is never there for you or does not give love – can you call it a father? We think it is important to be open about this. Liz and Sam can later contact the donor if they want. “
In the meantime, their daughter Liz is growing up with a brother who is slightly different, although she does not yet understand the reason. “She often tells that mum and dad are going to the hospital with Sam. It is now more about him than her, and that sometimes feels difficult. She recently wanted to hug in bed and she turned his head around. We immediately got stressed. You are constantly working on it.”
“It doesn’t matter if he’s the biological father.” © Fotovansam
Finance
In the meantime, Stef and Brit are trying to keep the household running as well as possible, despite their busy working and family planning. Brit still has pregnancy leave of her job in marketing and communication. Stef works full -time in chemistry, and financially they have a joint account for the fixed costs and daily expenses.
In addition, everyone has their own account for personal purchases, presents or smaller expenses. That gives them the freedom to make themselves choices, without constantly having to discuss everything.
“The most important thing is that we keep the humor in it and stay positive.” © Fotovansam
Supplement each other
“I usually cook, but when Stef is home earlier, he takes over. We have distributed the tasks well and fill each other in a nice way: I usually do the laundry and it is very handy, so if something has to happen on the wall, he will arrange it immediately.
Sam has been in his own room for two weeks. As a result, we always sleep with an ear and eye open. I wake up several times a night, look at the baby monitor or walk to his room to check if everything is going well. Actually there is no reason to take care of it, but you do it as a precaution. “
Henrieke (37) takes care of her seriously ill husband and son: ‘As if we are being punished double’
Yet they try to stay positive. “People often say,” Sam has chosen his parents, because he couldn’t get more positive parents. ” I think that is the most important thing.
More wife
Do you not want to miss anything about a woman? Especially for the most loyal readers, we send an email every day with all our daily highlights. Subscribe here. Furthermore, you can of course follow us closely on Tap,, “ Facebook and Instagram.