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"When my daughter arrived it was evident at birth something was wrong."

As any new parent, all I wanted was for my baby to be healthy and be able to have a “normal” life. My worst fear throughout my pregnancy was that my baby would be sick. Then that fear became reality for my husband and I.

Alexis was born on March 26 and it was evident at birth something was wrong. From this moment, our world completely changed. She had de-gloved feet, blisters in her mouth, and missing skin on her back, hands and stomach.

At first the nurse said “it’s normal – babies who are overdue; sometimes their skin peels”. But I knew this was more than just “peeling” of the skin. These were wounds, wounds that looked so painful.

Alexis was admitted into the NICU ward at just three-hours-old and was bandaged up like a little mummy. We couldn’t even touch or hold our new baby, the baby we went through multiple rounds of IVF to have.

I still remember the words that came from the doctor: “We believe Alexis may have a rare skin condition called Epidermolysis Bullosa (EB). She will be bed ridden for the rest of her life and you will be in hospital for many more months.”

My heart crushed into one thousand pieces. I have never cried so many tears. Having a baby should be a joyful and an exciting time of your life but for us, it was a scary and unknown journey we were about to walk. I didn’t know if I was even strong enough to care for a child with such high needs. But the mother inside of me took over, I became a different person in less than 24 hours.

alexis
"It was evident at birth something was wrong. From this moment our world completely changed." Image: Supplied.

When Alexis was transferred to Sydney Children’s Hospital we saw an amazing team of doctors, nurses, dieticians and dermatologists. They explained EB to us and gave us so much hope. Finally, after the emotional horror of the last 24 hours, all we needed to hear was everything would be okay, and this is exactly what happened.

Alexis was diagnosed one week after birth with Recessive Dystrophic Epidermolysis Bullosa (RDEB). She is the first member of both sides of the family to have EB.

We were told Alexis would have to have daily dressing changed for the rest of her life, that her toes and fingers may web due to multiple injuries, that she will lose her finger and toe nails due to blisters under the nail bed and suffer excessive scarring all over her body.

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She will also find it difficult to swallow normal foods as this may cause blisters not only in her mouth but also in her throat. Her life expectancy has decreased due to EB and we will be in and out of hospital for the rest of her life.

Whilst in hospital Alexis contracted blood, urine and skin infections. She was placed on IV antibiotic at seven-days-old and with multiple attempts, she had three cannulas to complete her seven day course of antibiotics. I never had thought about the chance that our child would have a life threatening disease, everyday in hospital was a blessing and torture all in one.

We were so blessed to have a kind and supportive group of people caring for Alexis and giving her the best chance at life. But deep inside all we wanted was to be home with a healthy baby to care for. We relied so much on the nurses and doctors we never thought we could do this on our own, but we were determined to be the best parents and provide her the best care she needed to live her life to the fullest.

The hospital provided a nurse to come to our house and assist us with bath and dressing change. Without this extra help we may never have left the comfort of the hospital as we didn’t have that many hands at home. Help wasn’t a press of a button away. The home nurse care made it easier to adjust to life with EB outside of the hospital.

I am in regular communication with our EB nurse and nothing is to big or to small for her. She goes above and beyond for all EB kids, not just Alexis. We wouldn’t be where we are today without her guidance and support over the last eight months.

alexis
"Alexis is so brave, she is always smiling and laughing. How can we be upset when she is so happy?" Image: Supplied.

Our nurse Rebecca got us in touch with DEBRA who have made living with EB so much easier. The support provided by this organisation has been life changing. This team has provided cooling for Alexis for this summer as the heat is not good for EB kids. They've taken a huge load financially off our shoulders by assisting us with the purchasing of bottle teats and the cost of her daily medications.

DEBRA work extremely hard and are dedicated to spreading awareness of EB and its impact on families just like ours. They care about every individual who has this terrible disease, we are not just a number to them. I love that DEBRA know our story, they know us, we are not just another family with EB to them. It’s like we are part of a bigger family and community.

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Every day we are constantly checking her body for new blisters or skin injuries. During every nappy change we pray that her clothes and nappy have not damaged her skin. Every time she picks up a toy we cringe. This is our life. Alexis is so brave, she is always smiling and laughing. How can we be upset when she is so happy?

We spend multiple amounts of hours each week doing bleach baths, dressing changes, lancing blisters and dressing skin injuries. Each day is different and parents with EB babies have to think differently. Even when we pick her up, we have to analyse the situation. The toys she plays with, the clothes she wears, the spoons she eats with, car seats, prams, highchairs, mattresses and bottles can all potentially cause damage.

Life as EB parents is hard. We have had to except that family and friends are going to injure Alexis’ skin. We have had to learn not to blame people for causing more damage. We have to let Alexis live a somewhat ‘normal’ life even if it means she will be in pain because we can’t wrap her in cotton wool and protect her forever.

Alexis started daycare in October, this by far was the scariest time I have experienced since her birth. I had to let her go and have people I didn’t know well enough care for my child, my child whose skin can tear just from being picked up incorrectly. I lost sleep everyday before she started day care. I had four orientation days just to be sure I could leave her in the care of a centre.

Today, I don’t even think about it. The educators at her daycare are fabulous. and the care provided has been incredible. They are so gentle with her and they adore her. Alexis loves the attention, so daycare has been the best decision we made. The morning smile as soon as we walk in and see all the educators melts my heart. That in itself is the reason I know she is okay and they are caring for her to the best of there ability.

We don’t know what to expect for the future, we don’t know if Alexis will get worse or if she only has a mild case of EB. Everyday is different, sometimes we can go a whole week with not one new blister, other weeks we can have a break out every day. I’m not going to lie, some days I find myself crying as I hold her while she sleeps in my arms.

There have also been moments where I blame myself for bringing her into this world. How could I be so cruel to let her live in this much pain? I wish I knew about EB before I had her. I wish I knew my husband and I were carriers. I wish we knew so we had a 25 per cent chance our children could inherit EB. But on the other hand I am blessed to have her and I am so proud to have her as my daughter. She has opened up not only my heart but the heart of so many people.

This will be Alexis’s first Christmas. We want it to be as magical and wonderful as it is for any other child. We do not want EB to define her; we do not want her to be known as ‘that girl with EB.’ She has such a big personality and we know she will not let EB control her life.

Our good days far outweigh our bad days. Alexis’s smile is so contagious, and people are naturally drawn to her. We are forever grateful for the support network that family and friends have given us. Without these important people, I don’t know where we would be.

To make a donation to DEBRA Australia, please visit their website.

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