Sometimes you already know before you give birth that you want to carry your baby (preferably as much as possible). You have studied the literature, have been inspired by experienced friends or it just seems nice. But then it all turns out not to be so obvious.
When carrying doesn't come naturally. Wendy is mom of a butterfly child
December 21, 2017
Wendy was a carrier fan before she became a mom herself. She helped us at fairs where she demonstrated dexterity with near-experience and helped moms try out our carrier systems. When Wendy became pregnant herself, one thing was certain for her: she wanted to carry. And she enjoyed doing so with her daughter Luna. When 2 years later Yade was born it all went differently....
Wendy: "Yade was born after a prosperous delivery. I was on a pink cloud for a minute, then something turned out to be completely wrong. Yade had no skin on her right leg. She was also in terrible pain. We had to rush to the hospital where, after a day of tests, EB was suspected: Epidermolysis Bullosa. We were referred to the specialist team in Groningen and there the suspicion was confirmed: Yade is a butterfly child. Butterfly children are born with skin as thin and delicate, as from the wings of a butterfly. The slightest friction causes blisters and wounds on her skin, which are difficult to heal."
"In our minds we were already saying goodbye."
Wendy and her boyfriend's world collapsed. "We had no idea what her life chances would be. Whether she would have a future. I could barely touch her, not hold her. Even the smallest contact could be painful for her. In our minds we were already saying goodbye, not knowing how serious her condition would be." After several uncertain days, Yade was found to have a moderate variant of EB. "We regained a little hope and were able to cautiously think about the future again."
" I could not resign myself to the fact that I would not be able to carry her"
With help from the team in Groningen and support from Children's Home Care, the family was allowed to go home with Yade. "There we learned to care for her. I still find that very intense. Dressing and undressing, changing dressings...the first few weeks we used morphine because otherwise she would scream out in pain. But the hardest part was that I could not have the contact with her that I had with Luna after delivery. I missed the bonding like I had with the oldest so terribly. I couldn't feed her, hold her or cuddle her. Any touch could hurt her, we thought at the time. That also meant I couldn't carry her. It was hard for me to come to terms with that.
I consulted with Kay to see if there would still be options for carrying her with me with a very soft cloth. We ended up with a click system, which defaults to me, and where the friction moment when putting it on is as short as possible for Yade. Kay made another special pillow for her little legs. The first time she was allowed in, tears rolled down my cheeks. How I had missed this! In my mind I had already said goodbye to my baby carriers. In the hospital I didn't even know if it would be possible to lift her and now I just carry her!"
Wendy is looking cautiously to the future. "We would like Yade to have as normal a life as possible. She goes to a daycare center for two days where I have trained her supervisor to take care of Yade myself. I would also like to resume my teaching job two days a week. I think that's important. Of course it's tough. We're always watching with her, which is quite exhausting. She starts rolling now, for example, so we have to make sure she's on a soft surface. In the playpen, in her crib, we have protection everywhere, We're learning better and better what can and can't be done. And sometimes you have to make choices: is a hug or touch more important than a spot on her skin. That's what I want to give other parents: find the balance. A touch or a hug is also very important. Fortunately Yade is very strong: she is always cheerful, she sleeps well and the contact with her sister is fantastic. We don't know what the future will bring us, but we are going all out as a family!"
Would you like to do something for butterfly children and their parents?
Stichting Vlinderkind is greatly helped by a donation for research into cures, in which they have already made significant progress.
You can donate directly: NL31INGB0000006737 www.vlinderkind.nl
