Cuddling, diaper changes, dressing your baby in cute baby clothes: these moments are normal for new parents if everything goes well. However, for parents at the NICU these normal things are big milestones, moments to celebrate even. Bianca de Ruijt knows this all too well. She’s a mother of a son, Tygo (2014), who was born at 30 weeks gestation. Before Tygo, she lost her daughter Kyra. Kyra was born at 21 weeks gestation and didn’t make it. Bianca shared her experiences in the Neonatal Intensive Care Unit in a book to create more understanding and awareness for parents’ struggles when they give birth to a premature baby.
“The smallest things feel like big moments of celebration”, describes Bianca in her book ‘Een giraf is geen aap’ (‘A giraffe is not a monkey’, pointing at the impossibility to compare babies with each other). “The moments when you can hold your baby during kangaroo care are definitely the highlights. When you’ve had a good home birth [13% of Dutch births still happen at home] or hospital birth without complications, you can change all your baby’s diapers, give feedings and you can cuddle all the time. These moments are scarce and therefore very special for parents at the NICU. Multiple days may pass by before you can hold, feed or take care of your own baby. And you so much need these moments next to all the uncertainties.”
For Bianca, not being able to hold Tygo was very rough. “After Tygo’s birth he stayed with me for a very short time - almost immediately he was taken to the academic hospital by ambulance. There is still little awareness for premature birth, so during my pregnancy I didn’t expect my baby to be born too early. But there he was, our little man, connected to wires, monitors and an IV. It was the first time I could have a close look at him. I watched him while my hand covered my mouth. If he would only get through the night! We heard about possible cerebral hemorrhages. What awaits us? All I wanted to do was hold him, take him into my arms, whisper sweet words, but I couldn’t. Again, like I couldn’t do that with Kyra. He had to stay in the incubator.” The next day, however, Bianca could hold him for the very first time. “I could finally hold my little one! The nurses placed him on my chest. I closed my eyes and I told him a lot of stories. He was so tiny, so fragile that it scared me. I told him that I was so proud of him.”
'No one can keep me away from him'
Three days after Tygo was born, Bianca had to check out of the hospital due to hospital policy. That felt like a big challenge: Tygo was still at the NICU fighting for his life after an infection, while she was at home. Well, not really at home, because every minute she could, she was with Tygo in the hospital. Everyone was telling her to go home and get some rest. She had a C-section and needed time and rest to recover from that. “Of course everyone was right. They’ve told me a hundred times to go home and get some rest. But ‘HELLO!’ My child is in the hospital and no one can keep me away from him! I couldn’t explain this feeling to people. I think for family and friends it is not even possible to truly understand a stay at the NICU, because there is still so little awareness. Therefore it is so important to communicate and talk about all the tests and operations like heart and brain ultrasounds, all the monitoring patches and uncertainties on top of the recovery from giving birth. I just couldn’t stay at home and go to bed while Tygo was in the hospital, however badly I needed the rest.”
Making the NICU stay more bearable
We ask Bianca what she needed most during the NICU time. “I think that we underestimated the impact of a premature birth. During this unexpected and scary time, you need support in all ways. The possibility to stay in the hospital as a mother with your child would make a big difference. I also needed more support during the first scary weeks: a short daily talk with a psychologist for example, more informational brochures or other ‘not heavy’ information. Taking away the pressure you feel to produce enough milk for your baby, or that the nursery is not ready yet. Unconsciously there are so many things that have impact during a NICU stay and both parents just have to deal with them. Especially dads can be easily forgotten about. Products like Hugsy, but also products like a single monitoring bracelet instead of several monitoring patches, are important for making the NICU stay more bearable for parents and babies. In this field I see so much room for improvement, besides the necessary medical care.”
'Follow your instincts'
To wrap up: what should parents do when they end up in the NICU with their baby? Bianca: “It is almost impossible to give advice, because all situations are different and that is typical for premature births. I think it’s important to follow your instincts as a mother. When you know something is wrong, insist on a consult. Do what you think is best for yourself and your baby, even if other people do not understand. For example: if you don’t feel well enough to receive visitors, then cancel. If you share your biggest concerns and experiences, people will understand your situation better.”