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MY FAMILY INCLUDES NURSES NOW

MY FAMILY INCLUDES NURSES NOW

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Having a third child was never destined to be easy. Although we were delighted when we found out we were expecting our daughter, our thoughts also turned to the practicalities - what happens when I go into labour, how will school runs work, is it possible to continue my eldest son’s swimming lessons with a toddler AND newborn in tow? Never did we imagine the life-changing experience and juggling act we were about to be faced with. 

Our beautiful daughter Emma was born on a February night, four days overdue. Her movements had slowed slightly towards the very end, but we put this down to having less space; the pregnancy had been healthy and we had no cause for concern. My husband and I sat in the clinical ante-natal room preparing for a ‘sweep’, when our midwife found our baby’s heart was beating slowly and took me to a ward to be monitored. After 40 minutes, we had a decision to make: chance a natural birth or deliver our baby by emergency c-section - the choice was obvious. Not long after, Emma made her way into the world and we spent five minutes or so with her, hearing her first noises and taking in her beautiful face and head full of dark hair. Soon she was rushed away and it was the last time I saw her without tubes, wires and machinery attached to her. 

Not long after, Emma made her way into the world and we spent five minutes or so with her, hearing her first noises and taking in her beautiful face and head full of dark hair. Soon she was rushed away and it was the last time I saw her without tubes, wires and machinery attached to her. 
— Claire

Every test was conducted to find out the reason why our seemingly healthy, physically normal daughter wasn't breathing. There was no reason - her lungs were formed, heart was perfect and airways clear. But she just couldn't cope without a ventilator. After much googling and work behind-the-scenes carried out by Emma’s amazing consultant, a genetic condition was revealed - Congenital Central Hypoventilation Syndrome. In short, a very rare genetic mutation that affects the body’s autonomic nervous system and causes the breathing centre to ‘shut down’ during sleep. 

Mentally, I can only describe coping at this time as ‘keeping my head above water’. I constantly remember a sense of drowning, the slightest wobble or weakness I felt would tip me into complete irreversible breakdown. But I had two other children to consider and keeping on top of Emma’s medical care and journey home provided me with focus. 

Following a month at her birth hospital, Emma spend nearly seven months at Great Ormond Street. I stayed there by her side during that time, leaving my husband and sons at home. This, by far, was the worst time for me on a personal level. The security of home, being 100 miles away, with a limited support network, missing my boys (one of whom was still only a toddler) whilst dealing with all the ups and downs of Emma’s habilitation and learning a whole medical glossary at the same time was almost unbearable. If anyone asked if I had other children, I would break down in tears. The guilt I felt about being away from them consumed me. 

Following a month at her birth hospital, Emma spend nearly seven months at Great Ormond Street. I stayed there by her side during that time, leaving my husband and sons at home. This, by far, was the worst time for me on a personal level.
— Claire

With each step that brought Emma closer to home, things felt just slightly more manageable. We grew in confidence in caring for our medically fragile child and got seriously organised so life at home ran as smoothly, and with the least amount of stress, as possible. That said, nothing could really prepare us for bringing her home and the fear we initially felt in being fully responsible for managing her life on a daily basis.

Fast-forward two years, and life is very different. We have had to adjust to a lot of changes. We have nurses in our home every night, watching Emma sleep to check she is safe. We have a day health support worker and nanny to help with the boys, as Emma requires constant one-to-one care. The privacy that everyone should be able to expect in their own home is not ours to enjoy, and I struggle mentally with this. It is almost harder than dealing with Emma’s medical needs, which are demanding and constant. But these professionals give us respite, so we are learning to adapt, embrace this extended family and reflect on the challenges. 

As a family, we are closer and appreciate our time together so much more. There are many cuddles in our house and love all round. The boys have bonded with their little sister and see past the tubes and wires to the smart, cheeky little cookie she is truly is!

Keeping my mental health in balance is difficult. I have significant ups and downs. Somedays I feel so proud of all we have achieved, at our gorgeous, vibrant and brave daughter and feel pretty invincible. Other days I look at other families and people and question why life has given us this exhausting, insurmountable challenge that will be ours for life. I’m trying hard to open up more. I’ve joined forums and social media groups and realise i’m far from alone and part of an extraordinary and supportive group of people. I have unique friendships with mothers that I met at Great Ormond Street whose children have similar medical needs and we completely get each other’s problems. Whilst having to fight for fair care entitlements and opportunities for Emma, i’m trying to keep my integrity. It is hard - but the biggest lesson i’m learning is to take good care, notice my feelings rather than succumbing to them and to be kind to myself - and hope that the rest falls into place. 

Written by Claire Gulliver

@clairegulliver

CCHS UK - provides support for people affected by CCHS throughout the UK www.cchsuk.org

CCHS Network - providing support for families across the world affected by CCHS through research, networks and funding www.cchsnetwork.org


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