On Bonding With My Daughter With Down Syndrome

When my daughter was born I wondered why I wasn’t feeling that strong bond as we lay beside each other in the hospital.

We received a post-natal diagnosis of Down syndrome when Síofra was born. I wondered if that was why I wasn’t connecting with her. I felt really guilty about it.

Myself and my husband had desperately wanted our own child. We went through IVF unsuccessfully. We were thrilled to be pregnant. So I really wondered why I wasn’t besotted. I was worried that I wouldn’t be able to see past her diagnosis. I judged myself really harshly for even thinking like that.

I didn’t realize that because I had a cesarean birth I hadn’t felt the explosion of Oxytocin, the naturally occurring love hormone, that mothers experience when they give birth vaginally. It creates that bonding feeling.

I have come to understand that it was more probable that the lack of Oxytocin in my body and the fact that she had to be lifted from my body was the reason that I struggled to bond with her. And that it had nothing to do with her extra chromosome.

Like many first time Mums I put myself under a lot of pressure to be a certain way and feel a certain way.

Becoming a Mum is a big life change. I didn’t realize how different life was going to be … or how I would be affected by it.

For me, I had another layer of pressure as I had to also deal with my daughter’s diagnosis. Doctors, nurses, lactation consultants, pediatricians, social workers visited.

My daughter had to undergo a battery of tests to check her stomach, heart, eyesight and the standard hearing tests. I was given good advice, sympathetic looks, bad advice. I didn’t know how to feel.

In all of this I forgot myself. And the fact that I had undergone major surgery.

For my birthday two weeks after Síofra’s arrival into the world we had our first heart appointment. We had to park ages away. I walked as best I could to the hospital from the car, only two weeks after surgery. Looking back I was crazy to do this. I should have been dropped to the door. In fairness to my husband that was what he had suggested. But I was trying to act normal, whatever that was supposed to be.

That day I paid as much attention as I could to the news that she had a small heart defect. To be honest it was all a blur. We didn’t know anyone with Down syndrome and didn’t have any information about the possible health complications that can occur as a result of their extra chromosome, Trisomy 21.

So I had all of this going on while also shedding my skin as an independent woman with no children and becoming a mum. Can you imagine?

My attitude was just to deal with what was in front of me. That’s advice that I share with many Mums who come to my classes now. I wish I had been able to give myself that advice.

Some people thought we were in denial. Maybe we were. But we had waited a long time for our daughter. So health issues apart we were delighted she had finally arrived.

At the time I thought that if we could have stayed in our bubble we would have been happy. But everyone wanted to talk about Down syndrome, how we were feeling about the diagnosis and my daughter’s health.

To be honest the questions about her health before the usual questions that one Mum asks another, drove me mad. I really resented being asked how her heart was. What an odd opening question. I would have preferred to have been asked how she was sleeping.

We had so many appointments. Being a new parent neither myself or my husband had developed our confident NO at that stage!

Obviously I knew on so many levels that Síofra had Down syndrome. I told people who I didn’t even know. Anyone who peeped into the pram was told. People at the checkout in the supermarket. The postman, anyone who came to fix something in the house.

But I struggled with the idea of meeting other Mums who’s children had the same diagnosis as mine.

Of course I was dealing with my daughter’s diagnosis every day. I had to face hospital appointments, Public Health Nurse appointments, Early Intervention visits from social workers and physio. But on some level I didn’t want to connect with Down syndrome. I was afraid of what it would mean for her and her future and what it might mean for me.

My Mum wanted me to go to a support center and take part in a class of baby massage with Síofra. She knew the instructor and she felt it would be good for me. Of course she was right. But don’t tell her that! I’ll never live it down.

By going somewhere with other babies or children with the same diagnosis I knew that I would have to face the reality of what life might be for Síofra.

All I kept hearing about was that there were so many problems that we would have to face. I didn’t want to deal with it.

Also I had plans for my maternity. I had things that I wanted to do with my little lady. I wanted to go to swimming lessons and do Mum and Baby yoga. So I did.

Eventually, when I was ready, I signed up to a baby massage course in the Down Syndrome Centre. It was lovely. We were all in the same boat. First time Mums, second time Mums, all needing to chat about the things we had in common, breast feeding, feeding, sleep, in our case hospital appointments. I have since realized that it’s the same for mothers of typical children.

You want to tell your story, you want to hear other women’s stories. You need support. You need empathy. You need to talk it all out.

As it happens, baby massage was fabulous. It was easy to learn. My daughter loved it. The songs were fun. And it was great to chat to other Mums. Síofra enjoyed it and I didn’t feel under pressure. I felt supported by Bridget, the Instructor. Every week I got to know the other Mums. Some of them attended the same Early Intervention Service as I did which was great.

It started a connection with Síofra’s community of friends who have Down syndrome. And my connection with their Mums.

Often I think back to those first couple of weeks when my daughter was born and we had to deal with the news of her diagnosis. Sometimes I’ve judged myself harshly in those replays. I love my daughter. I still struggle with her diagnosis. But I wouldn’t change anything.

I have changed my life since Síofra was born. I gave up working in advertising so that I could make sure that she could reach her potential. And I’ve retrained as a prenatal yoga teacher and a baby massage instructor. Most recently I’ve created a yoga membership to support parents of children with Down syndrome, because I know how hard it is to commit to a yoga class or any kind of Me-Time. I record the classes so that parents can watch them back. I’ve created what I need for others. It’s changed my life.

I would not have done that without Síofra’s diagnosis. She has opened my eyes and made me more in touch with others. Our experience has made me more open to the struggles that others might be experiencing.

So if you’re struggling as a first time Mum, that’s OK. It’s totally normal. If your child has a diagnosis and you can’t see past it, don’t worry, you will see past it once you have the information that you need.

Take one step at a time and be gentle with yourself. You deserve it.

Elaine xxx