Becoming a mother of a premature baby: A conversation with preemie mom Ditte

Ditte's son Pilou was born at 22 weeks old, 121 days prematurely, and is one of the youngest premature babies to survive in Denmark. We sat down with Ditte to talk about what it is like to be a mother to a premature child, and how life is today 2 years after that fateful night when she gave birth to her son Pilou alone in a hospital toilet.
This blog post is a part of BIBS’ Real Parenting. Here, parents share their stories, experiences, and parenthood journey. Parenthood comes to life in the stories we share – whether it is moments of happiness or moments of sadness, we can all learn from each other.

Giving birth to Pilou

Pilou was born after a period in which Ditte underwent emergency surgery for appendicitis. Three days later, Ditte ends up spontaneously giving birth to Pilou alone in a hospital toilet without supervision from either doctors or nurses.

It was a chaotic birth. I was in total shock, and you just go into pure survival mood. In a way, you become very primitive, and you don't really relate to the surroundings, or what you say or do. When the staff arrived, Pilou was taken away. So, an hour passed before I saw him again. By then he was in an incubator with all sorts of wires and a respirator. It was so unnatural, almost artificial, and really shocking.

Being born at only 22 weeks raises a lot of ethical dilemmas because only 1% of babies born between 22 weeks and 23 weeks live to go home*. And compared with a baby being born full term, Pilou at 730 grams was very small. Ditte explains:

Believe it or not but was actually quite big for his age, and this definitely gave him an advantage.

To question what it means to be a mother

Ditte explains that the initial time at the hospital was an extreme situation, making her a little emotionally numb because of the many difficult conversations and hard decisions you as a parent have to deal with and take a stand on.

For the first few days, I perhaps – unconsciously – tried to take care of myself in case he didn’t make it. At the same time, it is really difficult to bond with a child who is in an incubator, because of the physical distance between you and because he was so fragile. This resulted in me being really concerned about how to be a mother to him. But during the process, I also learned that you are a mother the second you give birth, and it does not matter whether you have a bond with your child from the start. The mere fact that I worried about our connection and bond meant that I was a mother.

Ditte explains that they were hospitalized for 5½ months with Pilou while they tried to create a life in the hospital while also tending to their older daughter at home.

It was incredibly hard to be separated, and not be able to explain to my daughter what was going on. She was only two years old at the time. However, we quickly came up with a solution, since we knew that we would be in the hospital for a very long time. My boyfriend and I split the time 50/50 between the hospital with Pilou and being at home with our daughter. It was very important to me to be with my daughter also because first and foremost I was a mother to her.

Creating a bond

I was allowed to hold Pilou 6 days after his birth. I actually didn't even know that you were allowed to hold them so early because it can be life-threatening for the child to get out of their incubators. But the hospital staff really prioritize it, both because you don't know for how long the child will live, but also because it is good for the child, and it helps you create an emotional bond. I never had so much skin-to-skin contact with my firstborn as I did with Pilou, which is kind of amazing thinking of the situation.

At the same time, I just highly valued the time I had with him. If things didn't go as hoped, I just felt lucky that I had the time we had together. And it may sound harsh, but we knew that there was a chance that he wouldn’t come home with us, so I just really appreciated the time we had together.

Being a mom of two today

Today Pilou is 2 years old, and he is an active and happy little boy. Ditte explains:

Of course, it has been tough. We had help from a lot of health professionals, and the first year was really hard. When you are standing in it, it takes up an incredible amount of energy and headspace. But when you're out on the other side it quickly feels like a smaller part of life. Today he thrives, he crawls, stands up, and communicates. Though he is delayed in many stages of his development, we are in no rush.

Today we really value life. We feel lucky. The best thing about becoming a mother to Pilou, has been watching his journey and seeing how unique and strong he is. You are of course always proud of your children, but he has added an extra layer to it. It feels a bit like magic sometimes when I think back on the time in the hospital. He’s a miracle and today he is doing better than anyone could have hoped for or expected. So it is with great pride that I look back on the first 2 years of his life.

Changed as a family

Pilou’s preterm birth didn’t just affect him, but it has had a permanent effect on the entire family. Ditte elaborate:

Pilou’s birth and post-birth experience have affected us as a family in multiple ways. We don't pay so much attention to trivial matters. Lack of sleep or many days with a sick child doesn't matter and affects us that much. We know how bad it can be.

Another way the experience has affected me is that I now know how important it is to listen to the body’s signs – both for the children but also for myself. If one of the children gets sick, I go straight back to the trauma with Pilou and that has really changed how I am a mother today vs. before Pilou. 

Ditte’s best advice

Remember that it will get better!

I hope that Pilou’s story can be a light in a dark time providing hope for other parents. We knew that the outcome with Pilou might not end up with us bringing him home. But reading other people's stories where they brought their child home gave us hope and some recognition. The feeling of not being alone. So, I hope our story can be a part of that for other parents.

It doesn't matter whether you gave birth at week 22, 28, or 34. You are just as vulnerable as a parent. I don't go around feeling that Pilou's story is the wildest and craziest and that no one else can relate. We have met so many people who have completely different stories, just as earth-shattering as ours, and we can easily reflect and recognize things in each other's stories.

My other advice is to ask for help! We made a shared chat with our family and friends. This was where we would make updates about Pilou and where we could write what they could do to help us without them needing to contact us. It was fantastic the support and help our relatives offered but we simply couldn't manage to talk to everyone, accept and coordinate the help. And then it ended up with us getting no help. So, with this tool, they could help us without us having to decide on anything. It made a great difference for us.
Thanks to Ditte (and Pilou) for sharing their story!
Margaret Brazier and David Archard, J Med Ethics. 2007 Mar; 33(3): 125–126