Introduction

My name is Morgan and I'm 25 years old. I have a gorgeous little boy named Brandyn who is 17 months old.

I have started this blog for a few reasons, the first being that I want to create awareness for my son's condition, lamellar ichthyosis. I hope this can be a place where parents of children born with this condition can come and have a better idea of what to expect. When Brandyn was born, I was lost and there wasn't much information here in Australia. I have since found the support forum of ichthyosis.com and I am so grateful to all of those people there for guiding me.

I also feel that if people knew more about the condition, they would be less judgemental and accepting. I hope one day that people won't judge a person because of how they look but who they are inside. I realize this blog won't change the world but I feel I need to do my part.

So lets get started!!

Lamellar ichthyosis is a rare autosomal recessive genetic condition affecting between 1 in 200,000 - 1 in 600,000 people (depends where you look it up!). Babies are born in a tight shiny layer called a collodion membrane (see below). The membrane sheds within the first few weeks of life, revealing the underlying skin condition (usually lamellar ichthyosis or NBCIE which is grouped under ARCI- Autosomal recessive congenital ichthyosis). 5-10% of collodion babies have so called self-healing skin and have no underlying skin condition.

The first few weeks are rough. When Brandyn was born, we were told it was unlikely he would survive. Most collodion babies do survive with the help of a NICU but our journey certainly wasn't without incident. The membrane was so tight around his torso, he couldn't breath and was ventilated for the first few days of life.

Brandyn was transferred via NETS (Neonatal Emergency Transfer Service) to the local Children's hospital. He spent the next 4 weeks under blue lights (phototherapy) to help the shedding of the membrane.

When the membrane sheds, it leaves deep fissures in the skin, leaving the body open to infection. Brandyn had two MRSA blood infections in the hospital which were caught early due to blood tests and skin swabs every other day.

Eye care is also important with a collodion baby as the skin is too tight to allow the eyes to close (ectropion). This is managed by using eye products such as lacrilube and antibacterial eye ointments.

Feeding is also an issue with collodion babies as most of the time the baby cannot suck because of the tightness around the lips (eclabium). Once the membrane sheds, this improves.

Here is Brandyn when he was born.

I'm afraid that is all for today. I have so much more to write but Brandyn is awake from his nap!! I'm new at this blog stuff so I hope I did this correctly!! Tomorrow I will go into skin care and about lamellar ichthyosis itself.