My baby’s HIE left me with severe anxiety – Suzanne’s story

As I am a known carrier of Duchenne Muscular Dystrophy, my husband and I decided to go through IVF with genetic testing. My brother suffered with the disease and sadly died from it when he was 22, so we desperately did not want our baby to have the disease.

IVF was a stressful process and we had a very early miscarriage after the first IVF transfer. Having a positive result with an initial pregnancy test only to have a negative test result a week later broke my heart - I cried constantly for a few weeks afterwards.

When I found out I was pregnant after the second IVF transfer, I had extreme anxiety as I thought I would lose the baby. I desperately wanted to keep my baby safe. It was all I could focus on. But this pregnancy was thankfully a straightforward one, until I went into labour.

I went into labour two days early, and it started out well. I was five centimetres dilated when I arrived at the hospital but then I stopped feeling the baby move as much, so I was strapped to a monitor for the next four hours. From then on I seemed stuck at five centimetres dilated. When the time came to push, I was exhausted and after two hours of pushing, I still could not push the head out. It turned out that the baby’s shoulder was stuck behind my pubic bone. The room filled with doctors and nurses, and I was told to stop pushing.

I didn't know what was going on at the time but I was in extreme agony as I didn’t have any pain relief. My baby was stuck with her head out for ten minutes; it felt like an age. As soon as she was delivered, she was rushed to the Resuscitaire table and the room went quiet.

Emilia was born grey and floppy. I asked the midwife if she was dead but she just pointed to the table. I couldn't bring myself to look for about six or seven minutes. Then I turned and saw them wrap her in a towel, and my precious baby was in my arms alive (but intubated). She was then whisked away to the NICU to be monitored.

When she was four and a half hours old, the doctors decided to cool her for 72 hours as she was showing signs of having hypoxic-ischaemic encephalopathy (HIE). The cooling treatment is used for babies who suffer extreme loss of oxygen at birth to reduce brain damage. But I had never heard of the treatment before and I wasn’t sure if she would survive or be left disabled.

The next 72 hours were unbearable. Unable to sleep, I kept a vigil by my baby’s bedside. Each time I walked down the corridor to the NICU, I was filled with anxiety, I didn't want to speak to the doctors or nurses in fear of them giving us bad news. Sometimes I felt like I did not have the right to be upset as the premature babies in the unit were so tiny, fighting each day, while our baby was full-term and would be able to go home a long time before they would. But speaking to other mums in the room for expressing milk really helped – it made me feel like we weren’t alone in our grief.

Our baby girl, Emilia, was eventually warmed up and, after a few days, I got to hold her in my arms. It was a very precious and surreal moment which I'll never forget. She stayed at the hospital for a week and after all her test results came back normal, we could finally take her home. We were over the moon.

The trauma of the birth still stays with me though. I have flashbacks of the birth, seeing my baby being resuscitated. Memories of it visit me when everything is quiet, mostly at night when everyone is asleep. The thought that something bad will happen to Emilia continually crosses my mind; I feel like I have a lump in my throat all the time, and I often check her to see if she is still breathing. It is extremely tiring and all-consuming and can prevent me from enjoying each day. But the help I have received from the perinatal mental health team has helped me to cope. A psychologist visited me to discuss my anxiety and she gave me some very useful coping strategies, such as body relaxation and revisiting the birth in my mind to process what happened.

I would advise other parents feeling a similar way to seek support and talk to someone about how they are feeling. When I am feeling low and anxious, I also try to focus on how well Emilia is doing instead of the ‘what ifs’. Because thankfully, Emilia is developing off the charts. Like all babies who are cooled, she has follow-up appointments with paediatricians, physiotherapist and a neurologist, which she will need until she is five years old. But so far they cannot see anything out of the ordinary, so we are hopeful she will lead a normal and happy life. We cannot thank the doctors and nurses enough for what they did to save our precious baby girl; despite my anxiety, I feel incredibly lucky that my daughter is alive and well.

If you have been affected by any of the issues mentioned in this post and would like support, you can view our online support pages.