In the EO program Hands on the incubator, Anne-mar Zwart follows parents for whom the pink cloud is hard to find. Their baby was born much prematurely or seriously ill. So is baby Zahra, Rawya Mikoen’s baby. She was admitted to the ICN of the Erasmus MC because of a lack of oxygen during birth.
Nothing could have prepared Rawya for the nightmare she ended up in during the birth of her first child Zahra. “My pregnancy went well. Zahra did have a small cyst in her abdomen, but that disappeared on its own. I also had a slightly tilted uterus, but that was no cause for concern either.” Yet this was sufficient for a medical indication, so Rawya came under the control of the gynecologist and had to give birth in the hospital. “That was a good thing in hindsight.”
During the delivery Zahra had a hard time and her heartbeat dropped constantly. “During such a ‘dip’ I had to turn on my other side every time, so that her heart rate returned to normal. At one point she passed out for a long time. No matter what we did, she stopped responding. I was rushed to the OR and prepared for a caesarean section. From that moment on I don’t remember anything.” When Rawya awoke from her anesthesia, her partner told about Zahra’s birth. “Luckily he was able to attend. Despite Zahra being without oxygen for six to seven minutes, she did not require resuscitation. She was given extra oxygen.”
Cooling suit, hoses and wires
As soon as possible, Rawya went to the IC Neonatology, where her daughter was admitted. “I will never forget her first sight. She was in a cooling pack to reduce the chance of brain damage and damage to her organs. There were hoses and wires everywhere.” Because oxygen deprivation can have lifelong consequences, it was very important that Zahra was cooled immediately. There are two stages of brain damage. The first phase occurs when the brain does not receive enough oxygen, as with Zahra. This damage is permanent. The second phase does not occur until six hours after the lack of oxygen. Cooling can prevent this second phase from occurring or from progressing less severely.
If the MRI scan result was also not good, the treatment would be stopped
Zahra had to lie in a suit with cold water running through it for 72 hours. This lowered her body temperature to 33.5 degrees. “As soon as she put on the cooling suit, an ultrasound was made. This showed that the damage was so extensive that she would not survive and the treatments had to be stopped.” Zahra was urgently given an MRI scan. “If the results of the MRI scan were also not good, the treatment would be stopped. I will always remember that moment and the fear and tension we felt then.”
The relief was great when it turned out that the brain damage was less serious than expected. “In fact, she was soon doing so well that she was transferred to the High Care department.” Rawya and her partner cautiously hoped it was mild brain damage, rather than serious brain damage. “We were told she has Cerebral Palsy (CP).” CP is a posture and movement disorder caused by damage to the brain. “As a result, part of Zahra’s brain does not function or functions differently and she has motor limitations.”
As the months passed, it became increasingly clear that the heavy labor and prolonged lack of oxygen had left deep marks in Zahra’s life. “The first weeks there was little to notice. She had, however, had problems swallowing and eating from the start. To this day, she still receives tube feeding. It soon became clear that she has difficulty controlling her muscles. If she wants to grab something, she has to think carefully to make her arm do what she wants. Everything has to be learned, because it doesn’t happen by itself.”
Since the birth of Zahra, Rawya feels like a different person. “My life revolves around her. I stepped into a world I had never heard of before she was born. It always happened to others. It’s only since we’ve been in the middle of it ourselves that I realize the challenges and obstacles that come with living with a care-intensive child.”
A physiotherapist and a speech therapist come to your home every week. “Zahra also goes to a rehabilitation center. We also have regular checkups with the pediatrician, neurologist and audiologist (she is hard of hearing on one side). At the moment we think that she has not suffered any mental damage from the lack of oxygen. She understands a lot and develops normally in that area. She does have physical limitations and we have to bring the world to her, instead of letting her go exploring.”
The first period after her birth, it was difficult for Rawya to bond properly with Zahra. “I was busy with the concerns that there were and was in survival mode. For a long time I denied that I suffered from attachment problems. Fortunately, it turned out all right. She’s such a sweetheart too! Always cheerful and happy. We enjoy her every day and are grateful for all the small steps she takes. Of course there are times when I find it hard to see her struggling with the consequences of her lack of oxygen. That can really make me sad. Yet you also learn to deal with this. It helps me to talk about it openly and to read a lot about it.”
It felt like we were alone in the world
Rawya didn’t have to think twice about participating in the program Hands on the incubator. “I share my story as an encouragement to other parents who are going through this. For a long time I felt alone in what happened to us. It felt like we were alone in the world. I think that was also because I couldn’t put up with it and couldn’t and didn’t want to talk about it for a while. Once the acceptance came, I felt how nice it was to talk about it with other people and to notice that there were people who understood us and went through the same thing.” She concludes her story with the tip not to bottle up your feelings and to find people you can talk to. “If you as a parent are not doing well, your child will feel it. Take care of yourself and take a moment for yourself every now and then to recharge!”
Hands on the incubator
Watch the episode with Zahra . here
Hands on the incubator
In ‘Hands on the incubator’ you see how Zahra is doing now and she is examined by the neurologist.