That awkward moment when you know more than your medical professional

Since Alfies arrival we have seen an array of medical professionals and bar the specialist team at Birmingham Childrens Hospital, not one of them had treated anyone with ichthyosis, not one had seen anyone with ichthyosis and most had not even heard of ichthyosis.  I don’t know about you but I found that quite shocking.  Ichthyosis is rare but it’s not unheard of.

There was no one in the team of midwives or obstetricians that were able to identify Alfie’s condition straight after his birth. He was delivered by a midwife and a student midwife, no one else was in the room when he arrived.  But afterwards I remember being surrounded by a lot of different midwives and doctors all stood around scratching their heads and trying to work out what his condition was.  Someone in the room (and I thought initially I had imagined this with being off my face on gas and air but Lee assures me that this happened) suggested that they wrap Alfie in a Tesco food bag (other brands of food-bag are available!)

The neonatal team didn’t know what they were dealing with but did an amazing job of doing what they thought was right.  The paediatrician that told me they suspected a type of ichthyosis had no first-hand experience of it right before he told me that Alfie would not have much of a life.  For a long time I couldn’t remember the name of that guy but have since remembered and if I am ever unfortunate to ever come across him again I will be showing him just how wrong he was.  When Alfie was a couple of months old we had to take him for a follow up appointment with a paediatrician to check everything was ok following his stint in neonatal and he actually discharged Alfie from the hospital saying that he didn’t really know what he was dealing with so it was better for Alfie’s care to solely be at Birmingham Childrens Hospital.  While Alfie was in the neonatal unit he was seen by a lot of doctors, some medical students and nurses; I hope they all know what ichthyosis is now.

Our health visitor, community midwives and childrens community nurses had also never heard of ichthyosis although Alfie’s assigned community nurse had some experience with a child who had EB so some of the dressings we used were familiar to her.  Every new healthcare professional we came across had to be informed of Alfie’s condition, we had to explain it in detail every time we saw someone new, which as a parent who doesn’t really understand it themselves is a little odd.  The team that looked after us were great and they researched the condition themselves which made the pressure on us a little easier.

We still come across new people at appointments and again we have to explain it all every time, its tiring and I wish there was more awareness especially amongst people that are going to be in contact with ichthyosis in the first instance such as midwives, paediatricians etc.   I often find myself having to explain this medical condition to a healthcare professional and then asking them for what I want rather than them telling me my options.

Thankfully we were referred to Birmingham Childrens Hospital dermatology team and they actually know what they are talking about.  They have a large team who have experience with different types of ichthyosis.  Because Alfie’s type of ichthyosis has a lot of similarities with another rare condition called Epidermolysis Bullosa (EB), he was assigned an EB nurse specialist called Kay.  There are 2 EB specialist teams in the country, one at Great Ormond Street and one at Birmingham; I am thankful that we live so close to where this amazing team is based.  We are also lucky that we do have this level of support from a specialist nursing team as other types of ichthyosis do not have this available to them.  The EB team at Birmingham not only provide care in clinic alongside dermatology consultants but they also do home visits for affected families, speak at conferences, run training sessions for education settings and are on hand when you need advice.  I honestly believe that without the initial support from Kay and later from our new link nurse Victoria we would not have been able to care for Alfie as we did.  We wouldn’t have known what the hell we were doing.  I just wish that families with other types of ichthyosis had this level of support available to them as well.

Over the last 4 years we have explained ichthyosis to so many people involved in Alfie’s care and thankfully they have all been happy for us to do so.  Our GPs have been very open with us, we are very lucky that they take on board what we say and are happy for us to go in and ask for things that we need and they trust that we know our sons condition and what is best for him. 

I do often wonder though if I bumped into that paediatrician from the neonatal ward and tried to explain ichthyosis to him, would he actually be interested or would he be one of those that shut you down thinking he knows best (even though I know he doesn’t!)  I have the upmost respect for people working in healthcare, it’s a tough gig and I know I couldn’t do it. But, as in every aspect of life, there are those that need to remember they are actually human and that its ok that they don’t know everything about every single condition.  Be open, admit you don’t know and learn from someone that does know (Even though they may just be little old me with no medical training but a shed load of experience!)