How I became a Special Needs Mom

“Well, she is quite the little mover, isn’t she! That’s a rare sight at 36 weeks.” That is what the midwife said, during the final ultrasound. Everything was fine. With me and with our baby girl. She even stuck her tongue out, which we thought was very cute. Little did we know...

At 39 weeks the start of the delivery took me by surprise. Even when the contractions were at their heaviest, I kept on insisting it was cystitis that was bothering me…! But 45 minutes later, there she was: our beautiful baby girl Bommel. I know now that there is such a thing as giving birth too fast. Bommel and I both needed to catch our breath. Bommel literally, because she had turned all blue. Luckily she came around quickly. “That happens sometimes. Nothing to worry about”, our midwife said. In retrospect that is when it all started: our special needs journey. 

Turning blue
Just a few days later, we noticed that Bommel wasn’t doing well. She wasn’t able to drink enough, she couldn’t maintain her body temperature and she was losing weight. When we discovered that she did not know how to drink properly and that she had oral candidiasis, we thought we had found the root of our problems. Lucky us! But then things took a turn for the worse: only a few days later Bommel turned blue while drinking (by then she was being bottle-fed so we could keep track of her intake). Did I just see that right? When it happened again during the next feed, I immediately knew something was terribly wrong. Our GP came and that same afternoon Bommel was admitted to our local hospital's Neonatal intensive care unit (NICU). That was the moment our world stopped turning.     

Genetic disorder
© / 123RF Stockfoto
Only two hours after her admission, there were five ‘white coats’ around her little hospital bed. The pediatrician on duty looked at me with piercing eyes and told me: “You do realize that you are not going home today? We are keeping Bommel here for observation. We are thinking of a genetic disorder, most likely Down Syndrome.” I think I must have turned pale because the doctor asked me: “Mrs. Tomassen, do you understand what I have just told you?” I answered that I understood all too well, hence my paleness. Surely this was not the reason we had come here today… a genetic disorder…
Countless medical examinations, one surgery (laryngoplasty) and two months of hospitalization followed. During that time we ‘visited’ three different hospitals. It was a hectic and very emotional time. The thing that was eating away at me the most, was the complete and utter insecurity of what was failing our darling little girl. 

Now, almost five years later, Bommel is still undiagnosed. However, there are things we do know: Bommel was born with laryngotracheomalacia, hypotension (neck & torso), hypertension (arms & legs) and periodic breathing. Bommel is one of approximately 15 children in The Netherlands, older than 1, who is not a prematurely born infant, and suffers from periodic breathing. Usually this problem resolves within the first six months of life. Bommel is almost 5 years old. 

What has always stayed with me from that emotional rollercoaster, is how Bommel kept on fighting and how much she showed us she really wants to be here. After all the tests and medical examinations also came the realization that we are the parents of a special needs child and that we do not know what our future with Bommel holds. However, one thing is certain: quitting and giving up are not an option!

And so, after what seemed to be an uncomplicated pregnancy, I unexpectedly became a Special Needs Mom. And a very proud one at that! 

Want to read another blog? Dear Fiene, my letter to my oldest daughter.

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