Eleanor’s Volunteer Story

June 2, 2020

This Volunteers’ Week, we are celebrating our dedicated and incredible volunteers. Without them, so much of our work would simply not be possible. Eleanor is one of our fantastic Parent Supporters, and here’s her story.

I will never forget the day I met my daughter. I remember waiting to go into surgery for my caesarean section full of excitement and fear. I already knew there could be problems and the doctors were concerned she wasn’t gaining weight the way she should.

I lay looking at the high impossibly white ceilings with my step-mum, then suddenly we heard the cry, the cry that meant it was all over and she was here. I got to hold her although my body wasn’t working very well yet. She was beautiful, perfect. The midwife came over and took her away to do her checks and I relaxed as she was a good weight and had nice pair of lungs. What more could you want!

I got to hold her although my body wasn’t working very well yet. She was beautiful, perfect.

Suddenly I heard the midwife speaking anxiously, “get the paediatrician back now, there is something wrong with her mouth.” Seconds passed like hours as I waited to find out what was going on. The midwife finally came over and said, “your daughter has a hole in the top of her mouth we need to take her down to the special care unit for monitoring. What type of formula would you like your daughter to have?”

My step-mum immediately stepped in, “my daughter is planning to breast feed.”

“I’m sorry”, the midwife replied, “that’s not possible, we need to know what her preference is before we take her daughter down.”

I was devastated. I had been on all the birthing courses I could but in the end had to have a caesarean, and now here I was, the last normal thing I could do for her had been taken away. The next time I saw my daughter she had a feeding tube sticking out of her nose, two days later she was also on oxygen. I have never felt so lost, helpless and terrified as I did those first days sitting by my daughter’s cot as they ran a barrage of tests looking for anything out of the usual.

I have never felt so lost, helpless and terrified as I did those first days sitting by my daughter’s cot as they ran a barrage of tests looking for anything out of the usual.

Eleanor’s daughter, 5 hours old.

Soon after she was discharged I signed onto the CLAPA Facebook page and immediately my world went from just my small neighbourhood to a huge network of mums and dads who understood how I felt, who understood the pain of bottle cramp, and the embarrassing stares from others when your child has milk coming out of their nose.

Soon after she was discharged I signed onto the CLAPA Facebook page and immediately my world went from just my small neighbourhood to a huge network of mums and dads who understood how I felt, who understood the pain of bottle cramp, and the embarrassing stares from others when your child has milk coming out of their nose.

Over the coming days and weeks, I learned a lot about parenting that they don’t teach you in classes, the first thing I learned was there is no such thing as normal. Not one person has the same birthing experience, feeding experience or parenting experience. Looking back, I feel quite foolish at my reaction to my daughters condition as my daughter and I have a close bond and she has an iron constitution (I can count on one hand the number of times she has been ill).  CLAPA helped me through those early months and made me realise just how important it is to not judge. It also helped me stay strong and weather the storms we have had to face.

CLAPA helped me through those early months and made me realise just how important it is to not judge. It also helped me stay strong and weather the storms we have had to face.

Volunteering has been fantastic. During our last training session I met a peer supporter with the same type of cleft as my daughter. She started volunteering because her mum was always involved. She was so proud of her and wanted to follow in her footsteps. Nothing would make me prouder than if one day my daughter was sitting around a training table saying the exact same thing.

Eleanor’s daughter now, at 2.5 years old.

Thank you for volunteering for CLAPA and for helping to make the UK a better place for everyone affected by cleft, Eleanor.

You can find out more about our Parent Support Service by clicking on the button below.

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