By Ryan and Leanne Baxter

 

Our beautiful baby boy Louis was born on Monday October 31st, 2022, at the University Hospital of North Tees.

Initially all seemed well with Louis until what appeared to be a burn was found on his leg during a routine check by the hospital’s midwifery team. Louis was then admitted to the hospital’s special care baby unit, which looks after premature and poorly babies, and after further investigation, he was diagnosed with having a rare genetic skin condition called recessive dystrophic epidermolysis bullosa (RDEB).

Louis having EB was a huge shock to us; we weren’t expecting something like this to affect our baby boy and in honesty EB is a condition that we had never heard of as it is so rare. It is also a lifelong condition where any trauma or friction to the skin can cause painful blisters.

This was to be the very beginning of our journey with EB.

The last month has a been a bit of a whirlwind for us, having a new-born baby and balancing the care and time that any new baby would need with the day-to-day needs of our two other children, 11-year-old Sam, and 2-year-old Willow, was always going to keep us busy, but now with the additional specialist care that Louis needs due to his EB, it certainly has challenged us.

Thankfully as soon as Louis was diagnosed with RDEB we got the specialist help and advice we desperately needed and a referral to the specialist EB centre at Birmingham Children’s Hospital. Members of the team there travelled up to visit us in Teesside and gave us the specialist advice and support we needed which has proved to be invaluable. From teaching us how to safely pop Louis’ blisters, to dressing his wounds, and providing advice on how to best manage his pain, the EB team have been there for us every step of the way.

They also told us how to prevent break outs by dressing Louis in soft clothing without seams, using soft teats if bottle feeding, by taking care in how we move Louis, and providing advise on where he sleeps.

At first this was all very daunting with all the lotions and potions and different kinds of bandages that we needed but we now feel much more confident, and we’ve got into a routine which has really helped; we now prepare the bandages the night before so that we have everything Louis needs ready for when he wakes up.

We’re super grateful to DEBRA, the support charity for people with EB, for everything they have done for us so far. As well as offering practical help and advice, Ruth, from DEBRA’s community support team has to date been able to secure support grants for us which has helped ensure we have the specialist items that Louis needs. These have included a cooling pillow and fan, therapeutic Dermasilk clothing and bedding, a changing mat, and specialist feeding bottles amongst other things. They have also provided financial support to help with our travel costs as we have had to visit the hospital numerous times since Louis was first discharged.

We’re also really grateful for everything that the North Tees has done for us right from day one. Louis is back there now following a choking episode when he was taking some medication, but we know we’re in good hands and we can’t wait to go back home and look forward to a first Christmas together with Louis as part of our family.

Thank you again to the North Tees, the specialist EB team from the Birmingham Children’s Hospital, and DEBRA.

Ryan and Leanne Baxter
Mum and dad to Sam, Willow and Louis

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DEBRA works in partnership with the NHS to deliver an enhanced EB healthcare service, and through its community support team it works with the EB community, healthcare, and other professionals to improve quality of life for children like Louis, and thousands of other people throughout the UK, who are living with the pain of EB.

 

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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.