Losing twins to premature birth and breaking the silence in Asian communities

After 5 years of trying, 34-year-old research scientist Sharon from Newcastle was delighted to fall pregnant with twins, but sadly they were born too soon to survive. In this blog, Sharon reflects on her experience of baby loss and the importance of Asian parents having a place to share their stories.
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At 20 weeks pregnant with my twins, I went to the Maternity Assessment Unit to get a peculiar discharge checked out, and doctors found that my cervix was 2cm dilated and I had bulging membranes with traces of leaking amniotic fluid. I was kept on the ward for monitoring and the next few days were horrible.

I had tough conversations with the obstetrician and neonatal ICU team about PPROM, when they told me that if the babies were to come out at this stage their chance of survival would be very low, and that doctors wouldn’t be able to intervene until we reached 22/23 weeks. 

The thought of buying more days to keep my babies alive seemed like such a daunting task.

Our exciting scan brought shocking news

We’d been looking forward to 23 December for a very long time: our babies’ 20-week scan, where we’d get to find out their sex, and learned that we were having a girl and a boy. However, with all the excitement came the shocking news that the sonographer could not find my little girl’s head; she was head down fully engaged in my cervix, which explained all the pelvic pressure I’d been feeling.

Consultants told me to wait and see, but prescribed antibiotics to reduce the risk of infection. We agreed with neonatal support that we didn’t want any intervention until 23 weeks, because the viability at 22 weeks with twin pregnancy was very slim and we didn’t want to cause them any pain.

Those first days in hospital didn’t seem so bleak as I could feel my babies kick and I could listen to their heartbeats; it was so reassuring to know that we were a team, trying to push to 23 weeks.

3 January 2021 will be the day I will never forget

My husband came for his 1-hour hospital visit and what I thought was a mad rush for a wee turned out to be when I delivered my baby girl. She came out naturally and didn’t cause me any pain or struggle. 

My sweet darling girl, Rayna, arrived at 22weeks+1, weighing just 400g. She was alive for 36 minutes, being cuddled and comforted by her parents. I watched her little wriggles and tiny breaths – and when she passed, she looked so peaceful.  

Her brother, Hakeem, didn’t end up coming. My cervix closed shut, as there were no contractions, so the consultant did an emergency procedure where he left Rayna’s placenta in my womb as not to disrupt Hakeem’s bubble. 

I gave birth to and lost my baby girl on the Sunday and my husband, her dad, was busy making her funeral arrangements for the Tuesday.

Just 24 short hours later, Hakeem’s water broke. I started having contractions and I was convinced he was going to come any minute. My husband had to decide if he was going to stay by my side to see Hakeem being delivered or go to perform a father’s rite at our daughter Rayna’s funeral.

He decided to stay with me, as he didn’t want to miss Hakeem’s birth, so we both observed our daughter’s funeral from the hospital via FaceTime; my husband’s brother did all the father’s duties. That was the most horrible day of my life, and I thought: how could it be any worse? 

But it only got worse

After Hakeem’s water broke, I was put on some stronger IV antibiotics. He was so good, my little boy – his heartbeat was good, his movement was good, he was growing despite having no waters around him… But I think he must have realised that his sister wasn’t there with him.

Due to Covid-19 restrictions, I wasn’t able to leave the ward or get to know other patients. It was a lonely place to be and I slept a lot. On Saturday 9 January, I was suddenly exhausted; I’d been sleeping for most of the days, just to pass the time, but this felt different. I started shivering badly, felt very cold and just wanted more blankets on me, but my temperature was above 38C and my pulse was racing as high as 185bpm.

They pushed me to a labour ward for monitoring, and the midwife was listening to Hakeem’s heartbeat every half an hour while my temperature and heart rate kept rocketing. Each time, they were struggling to find his heartbeat and it was getting fainter.
 
By this point I was in a delirious state. I didn’t realise but sepsis was starting to kick in. I felt 2 sharp kicks and I just knew something was wrong. I told my husband: they need to do a scan, something is wrong. 10 minutes later, we had lost him. 

I nearly lost my life too

My son Hakeem was exactly 23 weeks when he passed and was 640g. He was delivered via emergency C-section with general anaesthetic. I held Hakeem with double vision after the surgery, until the doctor told me I had to move to intensive care because I had sepsis.

My blood pressure dropped dangerously low, temperature was high, breathing shallow. They found fluid in my lungs and I was put on a CPAP machine. If this didn’t help, we were told I’d have to be put into a coma and use a ventilator to breathe. 

If it wasn’t for a consultant starting me on life-saving treatment instead of waiting for my test results, my husband would have lost both of our children and his wife that day.

I made a steady recovery, as I had some sort of fighting spirit inside of me. I was on incredibly strong antibiotics and weaned from the CPAP machine. My c-section scar was incredibly painful, as I hadn’t been able to get out of bed. I had to have physiotherapy to learn how to sit up, stand up and to walk again; things I took for granted, I had to relearn.

I was finally discharged from hospital, and I’m grateful to be home surrounded by my family. My road to recovery will be a long one, in terms of my physical health and for grieving my babies. My arms ache and long to hold them. After 5 years, they were our perfect miracles.

No one ever tells you to prepare for these things when you’re pregnant

After the first trimester, you think you’re safe, but not in my case. I didn’t show any of the textbook symptoms they were looking for in terms of Infection or signs of labour. I know the days will get easier as time passes, I just have to be patient and take each day as it comes.

Mum guilt is so real, as well as feeling the need to care for my babies who are not here.

I’m incredibly sad that I left home on 22 December with 2 babies, excited to find out the sex of our babies only to come home 5 weeks later with no babies, a c section scar and a bunch of medicines - including 1 to stop my breast milk. I will never wish this pain on anyone.

More support needs to be given to Black and Asian parents 

I feel to a certain extent baby loss is a taboo to talk about openly and sometimes Black, Asian and parents from diverse ethnic backgrounds do not receive enough support. We can be afraid to seek help as we don’t hear similar stories from our own communities, or we don’t see enough representation of ourselves in the media. 

Sometimes we are expected to get over our loss quickly and just move on.

We’re very fortunate that we’ve had plenty of love and support from our family and friends because this has helped immensely in our grieving process. We didn’t feel like we had to shelter our feelings, and despite the lockdown we’ve had family and friends reaching out and providing support. 

I feel when you’re processing baby loss, the pain is slightly more bearable when other bereaved parents can also resonate and share their own experiences with you, creating a safe space to talk about their angel babies. 

I think it’s so important for Asian women to share their stories or reach out so that they know they’re not alone and there are others who are in the same boat.

I’ve definitely found out that being part of Tommy’s baby loss support group has helped me immensely, in being part of this very unfortunate club that no one wants to be a part of. I’ve been in touch with other parents who’ve been through the same and it’s comforting to know how supportive they are in going through a similar situation.