By Hanne Widmer | Project Leader
A devastating diagnosis
Lauren and Richard were told their baby had a heart problem at their 20-week scan. They were referred to a specialist and, after scans confirmed the sonographer’s concerns, the consultant told them that Cole’s heart hadn’t fully formed.
Lauren said, “I was devastated, I felt numb. He explained that Cole had hypoplastic left heart syndrome, which is where the left ventricle of the heart does not develop properly.”
The consultant told them that this is a life-threatening condition and that Cole would need surgery immediately after birth or he would die. He also explained that some parents choose to terminate the pregnancy or not to have surgery but Lauren and Richard wanted to give Cole every chance.
Cole was born weighing 7lbs 7oz. When he was just three days old, surgeons attempted a procedure that tries to create a new circulatory system. This was the first of four operations in which surgeons tried to reconstruct the heart and insert a stent to help blood flow to the lungs.
At the fourth attempt they managed to fit a stent in Cole’s aorta, finally giving him a chance of survival.
Lauren told us, “over the next few days he improved and, when he was 14 days old, doctors gradually weaned him off life support. He was still very unstable, and we were filled with worry. All of this was an emotional rollercoaster. I was in a bad place.”
Invaluable help in the hospital
They were referred to Rainbow Trust and when Cole was 17 days old Family Support Worker Sian started supporting the family. Sian would come to the ward, help with Cole’s personal care needs and look after him.
Lauren and Richard also have a daughter, Esme, who was three years old at the time, and they needed to be with her too. Neither parent drive and the hospital is a 70 mile round trip from their home so they couldn’t be with Cole all the time. Sian being there helped ease the worry and constant concern about Cole as Sian would usually send photos and update them on how Cole was doing.
Cole remained in intensive care for three months but his health improved little by little. Sian would sing, read books, play with toys, play with musical instruments and sensory toys with Cole, to keep him entertained and help his development.
Cole needed another operation to widen the stent in his heart and, in time, he would also need a heart transplant. At six months old, Cole went on the waiting list and, two months later, in early March last year, he had a heart transplant. This filled Lauren and Richard with hope for him.
But sadly, at the end of March last year, Cole went into renal failure and died. Lauren and Richard were there with him. It was the most painful experience for them.
Family Support Workers help ease the pain
To begin with Sian helped support the family in their grief by visiting them on their doorstep and delivering memory boxes and activities for Esme. This support continued as she would check in and talk to Lauren via text message.
Sian also helped source a fund to help with funeral costs. As she couldn’t attend the funeral due to lockdown she sent them a special card and each Family Support Worker in the team lit a candle in their own home, showing their support at such a horribly sad time.
Then, in May, Family Support Worker Sabrina started to offer bereavement support. Sabrina did doorstep visits to deliver activities and referred them for a holiday to charity Ruddi’s Retreat as well.
Sabrina regularly texted Lauren for emotional support and they had long conversations in this way because they couldn’t have sessions face-to-face due to the ongoing restrictions. Lauren said, “I really benefitted from being able to talk things through by text.
“Family Support Workers Sian and Sabrina have been a light at the darkest of times. They’ve supported me and my family when we faced the worst.”
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