By Kirsteen Gardiner

 

Content warning: baby loss

I gave birth to my first child, Georgia, after a very normal pregnancy with no reason to suspect anything would be wrong. Georgia struggled to breathe as soon as she was born and I can recall those first minutes vividly when a midwife quickly wrapped her in a blanket and placed her in my arms, before whisking her away to the special care unit. The blanket cleverly covered raw patches on her tiny body where skin had sheared from her scalp and stomach during delivery. The doctors did not expect her to survive more than a few hours - but she amazed everyone.

She was later diagnosed with junctional EB generalised severe (JEB) and Edwards Syndrome; both conditions fatal in infancy. I had never heard of EB before and I naively thought the blisters which were appearing on Georgia’s tiny body would heal - but when a doctor explained the full extent of EB to me I found the horror difficult to comprehend. How and why had this condition suddenly invaded my family without warning?

Caring for Georgia was all that mattered and I dealt with the reality of her EB hour-by-hour, day-by-day. Thankfully I was able to take her home and provide her care. I had a crash course in EB wound care and tube feeding and left hospital within a week. Staff at the maternity hospital told me about DEBRA and Jackie Denyer from the specialist EB team at Great Ormond Street Hospital in London advised on her care. Georgia survived for four weeks and in that short time she made a massive impact on our lives. 

My second child Freya was born in completely different circumstances. A foetal skin biopsy sadly confirmed that, like her sister, she had EB so I had a few months to prepare for her arrival. DEBRA had grown in size by then, providing a dedicated EB nurse specialist and team based in Scotland which was a godsend.  They were involved from the start and coordinated everything from the pre-natal testing to advising midwifery and other healthcare staff who’d be involved in Freya’s care.

I was determined to enjoy as much of my second pregnancy as I could and not take a moment for granted. If Freya could survive until birth, an achievement in itself, then I would make sure that her short life was comfortable and full of love. I was confident that I would cope as I had the support of my family, friends, DEBRA and medical professionals.

I felt more in control of Freya’s delivery. Midwives adopted a ‘hands–off’ approach during my labour but I felt secure knowing they were there. My second beautiful baby girl was born perfectly protected by the amniotic sac, arguably the best cushioning for an EB baby. I 
treasure the memory of those first minutes with Freya when her skin was unblemished. I cleaned and dressed her, as only an EB parent knows how and we went home together. Like her sister, Freya was a fighter...her battle lasted three months.

The unimaginable strength Georgia and Freya showed every day of their lives empowered me to embark upon a third and final pregnancy. Whilst no less emotional, we were well informed and fully prepared for prenatal testing together with the results it could bring. Thankfully, testing confirmed that Ava did not have EB. Now a beautiful young adult, Ava is continuing the fight in memory of her sisters, fundraising for DEBRA, the charity which gave our family so much. I often think about how different our lives would have been without DEBRA and that is difficult to contemplate. I will be forever grateful to the charity for the care and support it provided and for enabling me to have a family.

Kirsteen and Ava continue to fundraise for DEBRA in memory of Georgia and Freya.

  

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The EB stories blog on the DEBRA UK website is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB. 

The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK.  DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.