As I mentioned in my previous post, the main focus of this
blog is ichthyosis. Before I explain
what ichthyosis is, I feel it is really important to tell you how our
ichthyosis journey started; it also happens to be where our parenting journey
started. Here goes:
On the 22nd May, only 4 days after moving house
and in the process of box-unpacking, I went into a very unexpected labour – it
was 4 weeks before my due date. After an
initial shock and panic from mum (who thought I was joking) and Lee (who had
his head through a hole in the utility door trying to fit a cat flap) and after
randomly throwing stuff into an unpacked hospital bag we rushed off to hospital
to have our baby boy. There was nervous
laughter (mum), excitement (me) and worry about not having eaten dinner (Lee)
but I was told I had to stay in so I could be monitored because I was
considered to be pre-term.
Labour was quick (under 9 hours from start to finish),
fairly pain free (thanks to some gas and air) and fairly textbook aside from
being 36 weeks pregnant. Our eagerly
anticipated baby boy was welcomed into the world at 5:14am. Immediately after having our son Alfie, we
knew something wasn’t right. Midwives
were calling for doctors, there was suddenly a lot of extra people in the room
asking questions about a family history of skin conditions. We really had no idea of what was going on,
it was all a bit of a blur. Alfie was
born with a small patch of red raw skin on his chest which the midwives noticed
as he was handed back to them after our first skin to skin contact. After that initial contact between us, he was
rubbed down and weighed by midwives unaware of what was about to happen to his
skin. After being rubbed down, Alfie’s
skin started to shear off and he was left red, raw and sore. No one in the room had any idea what was
wrong with him, it was probably the single most scary moment of our lives. Straight away Alfie was taken to the
neo-natal unit to be cared for and it was a couple of hours before we were able
to go down to see him.
Both Lee and I were in a state of shock, not only because we
hadn’t prepared ourselves for an early birth but also because no one could tell
us what had happened to our babies skin.
I don’t remember much about the hours that followed; there are a lot of
blurred memories and I don’t know if that was the effect of the gas and air or
because I have blocked some stuff out; perhaps a bit of both. I remember being taken to the neonatal unit
and been shown into a room with 3 incubators in; Alfie was in a humidified
incubator wearing a nappy that was way too big for him. There were so many machines and very poorly
babies in the room with us. Despite
weighing 5lb11oz when he was born, he was quite a little chunk, he was crying
(Lee said he looks like me when he cries), he had some dark hair and his skin
had peeled all over leaving him red raw.
I can honestly say that I felt like someone had ripped out my heart,
stamped on it and smashed me over the head with it; I was not prepared for this
at all.
At this point we still didn’t know what had happened to our
baby. We weren’t allowed to hold him at
that point and any contact we had with him was inside the incubator and we had
to wear sterile gloves to touch him. At
some point I was on my own with Alfie and the paediatrician came to see
us. He took me into a side room to tell
me that they suspected a form of ichthyosis, they had sent pictures to
Birmingham Childrens Hospital for assistance and were waiting for further
information. I don’t remember much of
what he said to me but one thing that I will never forget is that he said that
Alfie would not have much of a life….words failed me. When Lee came back I was in a total mess and
I don’t even have the words to describe how we felt at that point, we didn’t
know if would even be taking our baby home.
As the hours went by we were able to hold Alfie and bottle
feed him. We were shown how to change
his nappies inside the incubator. Two
days later we had an initial diagnosis from Birmingham Childrens Hospital based
on photographs and descriptions sent to them; Bullous Ichthyosiform
Erythroderma – wtf???! The dermatology
team sent through a set of instructions on how to care for a child with ichthyosis
– our baby literally came with a set of instructions!!
On the third morning after he was born, we walked into the
neonatal ward to find that Alfie had been taken out of the humidified incubator
and placed in a heated cot. There were 3
nurses stood round him holding the instructions trying to work out exactly what
to do. One of the nurses explained the
regime that had been sent to them and that if we were happy, she would show us
what to do and we could take over when we felt comfortable. We were then shown how to bath Alfie taking
care not to cause any more trauma to his skin.
After a bath we had to pat his skin dry, then liberally (and I mean
LIBERALLY) apply 50;50 ointment (like a watery vaseline), bandage his whole
body, apply more ointment and more bandages (like a greasy bandage lasagne!)
and finally put his clothes on inside out so the seams didn’t rub his
skin. Every couple of hours we had to
peel back the top layer of bandages and apply more ointment. All though this Alfie was either asleep or
screaming; so much so he lost his voice!
On day 6 we spoke to a specialist nurse from Birmingham Childrens
Hospital (BCH) and were told that if we were happy to fully take over his
care we could take him home and they would visit us the following day. So that’s what we did. As much as we were terrified of taking our
little baby home, we felt confident(!?) enough to take care of him knowing that
we were getting support from BCH. On
discharge Alfie weighed 4lb7oz, he was tiny.
And then the fun started!!
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