Supporting Costello families since 1996

Selin’s Story

Hello my name is Sandra; I am the mom of Selin. Selin has the Costello syndrome and she is the best that could happen to our little family. When I was sixteen weeks pregnant, Selin discovered a thick neck cyst and cysts in the neck, after which we were sent to a special clinic in Munich. There was then made a Chorionic biopsy and many much ultrasound examinations.

 In the 5th month we have already learned about her syndrome. I think it was great luck. Not many parents have the chance to prepare and inform them as well as we do before birth. Of course, it was also a huge shock and a lot of fear but already the first contacts with other families have helped and overcome our fear and we are just looking forward to our miracle. The pregnancy was very severe, I always had too much amniotic fluid and premature labour and I spent most of my time in the hospital. Until a few days before the 35 week of pregnancy, the doctors said that they will Selin get a Keizer cut. She already had heart problems and my pain was unbearable. The first days were very difficult. Selin was ventilated and sedated.

I was not allowed to hug her and touch her gently. After 3 days, the ventilation was removed and she was allowed to wake up slowly. Her heart was hard to control. She was also full of water and lost 700 grams within 1 week. But gradually it got better and she showed progress every day. Her heart had problems until the last day, but it was no longer life threatening.

After 4 weeks we were allowed to go home she had every breath help away. And got medicine for her heart. Since she drank almost nothing, she would be released with a probe. The first time was difficult. Again and again happened things we did not know and had to learn to deal with it. I have a monitor that monitored her heart. Every time he beeped you were in alarm readiness. We had to go to hospital two times because she got a racing heartbeat but now she gets 2 other meds and her heart is working pretty well now for about 2 months. At the moment and all the time we are struggling for every single gram. She is now 9 months young and weighs almost 4,000 grams and 54 cm (born 46 cm) soon, the decision is whether growth hormones yes or no. The motor is still very heavy she moves like a new-born.

But the important thing is it was already much worse. She makes her progress at her pace. Unfortunately, she still does not drink or eat, but she has been fed by the PEG for 7 months. It was a bit of a narrative but the most important thing is: time is heavy with fear and sleepless nights but it’s worth it. Selin is the loveliest tenderest thing I have seen but. She captivates everyone with her charisma and laughs a lot. Despite so many hurdles she is a happy baby and returns so much love thanks for reading