Sheila’s story

“Your baby has club feet.” These words marked the beginning our devastating journey.

As soon as the sonographer told us about our baby’s feet, I was overcome with shock and fear. I felt my eyes well up with tears. She did not explain any further details but asked me to go for a walk as she was having trouble seeing our baby’s heart. I ended up walking around the hospital two further times but still she could not properly see our baby’s heart. She asked us to wait to see the screening midwife. We waited and were invited into a room. A small room, with beige walls and tissues on the table. My husband, Tom, said “I don’t like this room”.

The midwife explained that our baby had club feet, also known as talipes, which meant our baby’s feet were pointing downwards and inwards. She reassured us that this is a treatable condition with surgery and also said we needed to be referred to a fetal medical unit. We drove home quietly with our leaflets about talipes. That afternoon, I received a call from from the fetal medicine unit asking us to come into the hospital the next day.

When we arrived at the car park we were confronted with chaos. The parking attendant shouted at us, telling us to “get out”. Tom dropped me off and had to find some parking near the hospital. I found the correct department. Tom eventually found me, tired and breathless. We were called for our scan by the consultant. She asked me a few questions: was this our first child? No. Is our first child healthy? Yes.

I lay on the couch and the consultant scanned me quietly. After a long time, she informed us that our baby had a ventricular septal defect; a hole in the heart. She could also see an echogenic bowel. Overall, the picture she saw suggested that our baby had a chromosomal abnormality. The only way to find out was to do an amniocentesis. We were taken into another room with a specialist midwife. She explained what they were looking for with the amniocentesis; potential genetic conditions and chromosomal abnormalities. She explained what Down’s, Edwards’ and Patau’s syndrome were. She raised the subject of termination, telling us that some parents chose to terminate the pregnancy when their baby has Edwards’ or Patau’s syndrome.

We waited for further scans that day with the heart specialist who confirmed that our baby had a VSD, but that this could be treated.

We left the hospital exhausted and dazed, not knowing that this would be the last day we would see our baby alive.

After this, there was nothing to do but wait. We waited for an agonising two days, and I received the call to confirm the news that there had been no indication of Down’s, Edwards’ or Patau’s syndrome. We would now need to wait for the results of further tests where they would look at every chromosome. We received this the news on Thursday and were reassured that we would find out early next week.

The following week came and went. No results. The uncertainty was excruciating.

Seventeen days after our referral, we received the news by phone call: “An abnormality has been found”. We were told that it was very rare and complex and that we now needed to wait for a call from the genetics department.

The next evening, we received a call from a genetic counsellor who informed us that chromosome 5 had been affected; part had been duplicated and part had been deleted. We asked what this meant for our baby, but the counsellor told us we needed to see a consultant who would give us further information. She booked us in for an appointment the following week. We begged to be able to go as soon as possible, but the earliest they could see us was in five days. She advised us to start considering the circumstances for termination.   

The next day my phone rang again. The person on the phone introduced herself as a registrar in genetics and asked if we had time to speak. She explained over the phone that our baby had a significant duplication of the short arm of chromosome 5 and a terminal deletion short arm. They would have low muscle tone, which would result in difficulty feeding; they would never be able to walk or talk; they would suffer from repeated fits. She advised us that this was a very severe outcome for our baby.

Since our scan, we knew that were facing the decision of whether we needed to terminate for medical reasons. We had agreed that we would never want our baby to suffer if they had a severe, life limiting condition.

I never knew that a family could lose their much-loved baby in this way.

In the storm of this trauma, we faced other decisions: what procedure to have, a medical or surgical termination. We selected the surgical termination, which involved a two-day process.

Four days after our phone call, Tom’s dad drove us to the hopsital. To start with, we went to the fetal medical unit where I was given an injection to stop our baby’s heart. I lay on the couch and held Tom’s hand. The doctor then made preparations for my surgery the next day. We went back to the hotel and rested.

The next morning, we attended the theatre. Tom wasn’t allowed in with me due to COVID restrictions. So, I hugged him and said goodbye. The doctors and nurses treated me with such compassion and kindness and I am forever grateful to them for this.

I walked into theatre and lay on the bed. The nurse and anaesthetist talked about the up and coming Olympics and I put the mask on my face. My last thoughts were of my husband, my daughter and my baby…

The next thing I remember was a nurse touching my shoulder asking me wake up. I woke up crying and I looked down at my stomach. I was no longer pregnant. I cannot find any words to sum up the despair and pain of that moment. Tom came to find me and my parents drove us the fifty-mile journey home.

The days afterwards were the most difficult I have ever experienced. Alongside the pain of losing our baby, I felt deep regret that we had chosen a surgical termination; I had lost my only ever chance of spending time with my baby. Support from ARC and the podcast Time to Talk TFMR has helped me to process these emotions and to treat the person I was at the time with kindness and compassion. I was making decisions from a position of crisis and trauma and I chose what I felt best able to cope with at the time. After all, that’s all any of us ever have- the moment we are in.

We discovered afterwards that our baby was a boy. A month later, we had our baby’s funeral service at Lambeth Crematorium. He shared an adult sized coffin with two other babies. Tom and I, and another couple went to the service.

It was really beautiful. The minister said how truly sorry he was for our loss. He read a poem called “The Snowdrop” with the words: “Every life that ever forms or ever comes to be touches the world in a small way for all eternity”. These words helped me so much on that day and every day since. We listened to “Somewhere over the Rainbow” and “Twinkle Twinkle Little Star”.

His ashes are scattered in the children’s garden of Lambeth Crematorium. It comforts me to know he is never alone.

Some months later, we decided on a name for our little boy. At his funeral the minister said that the babies were infants of St George. We decided to name him George, in honour of the place his ashes are scattered.

In the weeks and months after our loss, I felt an overwhelming sense of isolation and guilt: I didn’t feel part of the baby loss community because this was a decision we took. I am very grateful for the support from ARC; their publications, website and helpline have helped me to realise that we are not alone in our loss.

In February 2023, nineteen months after our termination for medical reasons, we welcomed our daughter Bethany Grace into our family. Following our loss, Bethany’s pregnancy was a very different experience and I had waves of anxiety throughout. Support from my husband, and family and friends really helped me manage my worry.

As I step forward on life’s journey, there will always be my little baby boy with me, just beyond my reach. George’s life was very brief but made a huge impact on me. I see the world so differently now because of my time with him. He has inspired me to treasure the time I have with my daughters, husband and our family and friends. He has taught me how precious life is. Saying goodbye to him was the hardest thing I have ever had to do; with the support of family, friends and counselling, I have found peace in knowing that our decision was made with the deepest heartbreak and love for him so that he would never know suffering and pain.