Coping with the loss of a child

By Rebecca Barry

Pregnancy is hard, motherhood is hard, but every part of it is worth it.  After 36 weeks, we welcomed our identical twin boys, Luke and Noah into the world on 4th May 2021, via elective c section.  They are perfect and my 6-year-old daughter dotes on them.  However, getting to this point mentally and physically was one of the most emotional journeys I have ever been on.

Unless you have experienced the loss of a baby before, it is unimaginable.  How could this have happened? Why us?  Will my marriage survive this? Questions which remain unanswered and those we will probably never fully understand.  

Baby loss

The past year has been tough, not just due to covid, but in July 2020, we lost our 5-month-old daughter.  Sophie was born on 18th February 2020 at 31+4 weeks, just before lockdown in Dubai.  

Baby loss

How Our Baby Loss Happened

Throughout the 1st trimester, I had suffered frequent headaches, but I put these down to hormones and my doctors did not seem worried.  Things were progressing well, until we returned from the UK after Christmas.  It went downhill from there and very quickly.

I couldn’t eat as I felt constantly full, I doubled in size due to excessive water and had frequent nose bleeds.  Doctors told us the baby may need an operation at birth as she was struggling to swallow.  We were also referred to a cardiologist as they thought the baby may have a heart problem.    

At 31 weeks, I was admitted to hospital for monitoring.  I spent 3 days having steroids and magnesium to reduce the possibility of preterm labour.  This, however, did not stop the baby coming and at 34+4, I woke up bleeding and went straight to the A&E.  30 minutes later, Sophie was born.  

It was traumatic to say the least.   

My water broke in the monitoring room, panic buttons were pressed and nurses and doctors rushed in, many of which, were on their way home after their night shift. IV needles were forced in my hand and I was rushed into the OR.  My husband was asked to sign forms incase either the baby or myself were unable to be saved.  I was quickly prepped for an emergency C section, but the baby had other plans and arrived in one push.

My first thought was I didn’t hear her cry.  Where was she?  I hadn’t seen her and before I knew it, I was leaving the OR on my own.  I was wheeled up to the ward, without my baby and asked lots of questions. Was it a normal pregnancy? Had I fallen over whilst pregnant?  All whilst not knowing exactly what had just happened.  We were told she had been taken to NICU, a concept I was not familiar with.  

After the birth

It turned out that the problems we had been told about and possibly needing an operation, were all false.  3 days later I was discharged from hospital, without my baby, who still needed to stay in NICU due to her prematurity.  After 2 weeks at home, I was still feeling lonely and confused.  How had I given birth but came home without a baby, no one prepares you for that.  I needed to go back to work.  I needed some normality to deal with what had just happened.  None of it felt real.  My whole pregnancy felt like it had happened to someone else and I had just read her story.

What we found out next would shatter our new perfect family.

The Diagnosis

3 weeks after agreeing to a genetics test, the results had come back.  We had been called into the hospital for a meeting with the cardiologist and NICU Manager.  Nothing could have prepared us for what we were about to hear.  “Your daughter has a genetic condition called chromosome 69xxx, which is fatal”. 

So, you are telling me that my daughter is going to die?  I’m still unsure how myself and my husband processed the information we had just heard.  

Maybe it was denial?  Maybe it was hope?  

There was no cure and due to the rarity of the condition, no-one knew how long she had.  It could have been a day, it could have been 10 months.  Most experts were in disbelief that she had survived for so long.  It was a miracle I had not miscarried before 12 weeks, which is usually the case.  For this reason, there is very limited research on this genetic condition.  

The missing pieces started to fall into place.  The reason why I had been so ill.  The reason why we had been diagnosed incorrectly. 

Our life after the diagnosis

Life became tough.  We visited the hospital every day for 92 days.  Lockdown had been enforced and leaving the house became more difficult.  However, reflecting back, the isolation made processing the news easier.  We didn’t have to answer questions from people.  We didn’t have to see how people reacted.  No one to judge us and tell us how we should and shouldn’t be feeling.  Working from home meant that I didn’t have to discuss the devastating news we had received.  Covid seemed to have worked in our favour and kept us in our own bubble to deal with it together. 

We had each other and we made it our mission to talk every day. We had agreed that when we stopped communicating, that was us over.  The grief would consume us and we would fall apart.  We couldn’t let that happen for the sake of our other daughter, who was also dealing with the future loss of her baby sister.

We both said things that sounded awful.  How we wished we hadn’t got pregnant and how we wished for it to be over.  I thought to myself, how can a parent wish for this?  But things had to be said so we didn’t hold everything in and fall apart.

Having her home after a 92 day NICU

The day came when Sophie got discharged from NICU.  A day we thought would never happen.  After 92 days, she was coming home.  This then led to further challenges we never expected.  Medical equipment we had to have that I had never heard of.  Countless pain medication which had to be administered correctly. Although we were fortunate enough to have 24-hour nursing care, we still had to receive training before leaving the hospital.  Simple things most people take for granted, like feeding using a bottle, we were not able to do.  Learning to feed her through a tube was the new normal.

Baby loss

We knew the day would come when she couldn’t cope anymore.  We got more time with her than anyone could predict.  We got to hold her.  Have cuddles.  See her smile.  All things we should never have experienced and that we will be eternally grateful for.

Sophie had to be admitted back to hospital another 2 times, each time we got her back home.  More miracles had happened.  Not only did she come home once, but three times!  Just before she turned 5 months old, her lungs could not take it anymore.  Her little body had grown bigger and she was unable to cope. She passed away in the comfort of our arms in Al Jalila Hospital.  

Dealing With Baby Loss Grief

Although we had mentally prepared for that day, it was still the hardest day of our lives.  We kept talking and telling each other how we were feeling so we didn’t grow apart.  I dealt with the grief the only way I could, by helping other families in similar situations.  I passed on all the medical equipment to families who were in need and offered advice to mums who shared similar experiences to me.  

We started to move forward, always making sure we remembered Sophie.  My daughter would always say good morning to her picture on the wall and reminded us when we didn’t.  I admire her strength and she amazes me how well she has dealt with the loss of her sister.

Sophie will always be a part of our family.  We were blessed to be able to hold her and thankful that we were able to create precious memories, which we will cherish for the rest our of lives.  

If you have been affected by any of these issues or want to get involved, please join the Facebook groups below or follow them on Instagram.  The community is fantastic and there are so many people who are able to offer advice and support.   


Small and Mighty Babies – Love through loss: A community bringing people together who have experienced loss.

Small and Mighty Babies: A Community bringing people together by offering support and care to those families anticipating premature birth, currently in NICU or who have recently come home.




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