‘My brain was trying to feel two opposite emotions at exactly the same time’ – Kelly’s story

Kelly's twins Henry and Stanley were born premature at 32+6 weeks. Sadly Henry died. Kelly shares how her neonatal experience affected her mental health.

Following four consecutive miscarriages I fell pregnant with non-identical twins. It was a high risk pregnancy and at 32+6 weeks I went to hospital following a large bleed. That night I haemorrhaged and was rushed for an emergency crash c-section. The twins were delivered whilst I was under general anesthetic. I had suffered a placental abruption and Twin 1 (Henry) was in very poor condition. He had been starved of oxygen and had to be resuscitated. He took his first breath at 24 minutes and was put on a life support ventilator. Twin 2 (Stanley) was put onto breathing support and both babies were taken to the NICU.

My husband was taken to visit the babies. He returned with a neonatal consultant and I was told the news about Henry. He had suffered severe brain damage leading to a condition called Hypoxic-Ischemic Encephalopathy (HIE) and might not make it through the night. I let out what I can only call an animal-like wailing noise. My twins were here, I hadn’t even met them and one was suffering and could die! The consultant said they would make room in the NICU so that I could go and meet the babies whilst still in my hospital bed.

The twins looked so tiny with tubes and wires and monitors attached to them. I remember Henry looked so pale and swollen and his eyes were fixed open. I held his head and hand and told him I loved him and I was so sorry.

It was later decided that there might be some chance for Henry but he would need a level 3 NICU. Our local hospital rang around and Henry and my husband were blue lighted to Chertsey.

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The next day I was transferred by ambulance. It was a painful journey but the staff were so kind. I felt worried about leaving Stanley behind.

I got taken to see Henry again. He had a one-to-one nurse and was in an incubator with monitors and machines everywhere and even more wires attached to him than before. My husband explained they were to monitor his brain activity.

The following morning we were asked to have a meeting with his consultant. We were told babies born before 36 weeks of gestation cannot have cooling treatment for HIE, that the condition was severe, and they couldn’t predict exactly what would happen to Henry. I felt like my world was collapsing around me.

That evening Stanley was transported to join us and was in a cot next to Henry. I was discharged from the labour ward and we lived in a parent unit at the end of the corridor. We lived there for five weeks leaving Marley at home with relatives - something I still feel terrible guilt over.

I started to suffer really vivid flashbacks to when I haemorrhaged in the hospital. I woke up a few times in the night calling out thinking it was happening again. My husband calmed me down and the next morning I’d always feel embarrassed as to who might have heard me.

We tried to create life-long memories with the twins. We read, sang and got involved in their care. Sometimes the twins were able to be in Henry’s incu-cot together. These were my happiest times as I would proudly watch my baby boys snuggle up together.

In week three, Henry was back on the ventilator but Stanley was moved to the special care room. I was running back and forth between the rooms and worrying about Marley. Whoever I was with, I then felt guilty about my other two children.

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Henry put up a miraculous fight and managed to breathe off his life support machine 3 times. But further problems would then arise, and he was eventually moved to palliative care. The consultants explained everything to us in great detail. I felt so useless as I just could not take in and process a lot of the information. One of the consultants reassured me that this is normal and they only expect parents to remember about 20 per cent of what happens in NICU.

At 31 days old, sadly Henry died. My husband and I held him in our arms and Stanley was snuggled right in to him. It was so heartbreakingly sad but at the same time I do feel this awful tragic day could not have happened in a more peaceful way. The staff were amazingly supportive, every little detail was planned to ensure Henry was comfortable and we all knew what to expect.

We were given advice and guidance on how to break the devastating news to three-year-old Marley. This was another really hard and upsetting thing to do. We were all in tears. Marley went to get his little tool box to fix Henry and another part of me died inside.

One week later Stanley was discharged. I felt so sad to be leaving the place where Henry had lived. I felt depressed leaving with one baby when I should have been taking two home. We also knew we would be going home to all of the twin things we had bought. I felt like I had forgotten how to run a house, missed out on nursery updates and wouldn’t catch up.

When we got home I didn’t have any time to grieve as I needed to look after Stanley. Additionally, Marley was very traumatized, regularly wetting himself, not eating, having nightmares and asking about death and heaven. We had support from a local health visitor who was the bereavement lead for the area. Sadly, her job role changed but she would still support me in what I think may have been her own time. I asked if Marley could be referred to play therapy to help him cope but there was a long waiting list. In the end, we paid privately for play therapy and that really helped Marley. I found two charities which support bereaved siblings - Winston’s Wish and Sponsor a Sibling. They sent us helpful information and advice.

After Henry’s funeral, I spoke with the health visitor about how I was feeling and she referred me to the local therapy service. I was having frequent flashbacks, which were still very real and scary. I was diagnosed with Post-Traumatic Stress Disorder and put on a waiting list for EMDR therapy. I started this in the New Year and would recommend it to anyone with PTSD.

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It was recently the twins’ first birthday. The lead up to it was very tough for me. I felt like my brain was trying to feel the exact two opposite emotions at exactly the same time, not sure if anyone can actually physically do this, but I don’t seem to be able to. I felt happy for Stanley but grief for Henry. I could actually picture Henry in the photos we took, playing alongside Stanley with his new toys. We included Henry in many ways and did some nice things as a family for him too. Many friends and family also acknowledged that it was Henry’s birthday too and that helped.

I know we still have a long journey ahead of us, my life will never be the same again and I have changed as a person. Sadly, I’ve learnt that I am not the only person this has happened to and met others in similar situations. I’ve learned that, even more so than I felt before, every baby born truly is a miracle and that you can never predict what is coming next in this life. It can all change in an instant

Did you find this story helpful? Listen to Kelly talk more about her xperience in our podcast – NICU, SCBU and you. You can also find more information and support on this page, including how you might be feeling, what support you can find and how to support someone else.

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