I met Bree and her mum Kristy at the Australian Ichthyosis Meet. She’s adorable. One of my highlights was seeing Adam getting Bree to smile by making funny faces. So cute!
Kristy writes of the challenges of having a baby with Ichthyosis – the condition can cause many other complications. Bree has not yet received an official diagnosis, which I am sure makes it difficult for getting the right treatment. But the short time I spent with Bree and Kristy showed me just how happy and loved she is, and what a great job Kristy is doing.
Meet Bree and Kristy.
Bree was born at 32 weeks and 5 days. I have a history of delivering premmie babies so it seems. So, when I found out I was pregnant with her, I had a feeling that it was going to happen this time around.
After a few days in hospital and all of the hard work was over with, we were delighted to welcome Bree into our lives. Due to her arriving so early though, and there being an infection present, she was taken straight from me once the cord was cut and admitted into the special care nursery, where she spent about 3 weeks before she was allowed home.
I remember when I first saw her, and the first time I held her. She had this odd looking white stuff over some of her back, and on the side of her face. She had stuff caked in one of her ears too. I remember thinking to myself “It’s the normal stuff that a baby has on them when they are born, but why didn’t the nurses wipe if off her? Never mind, I’m sure it will come off once she has a bath”. I was wrong.
It took quite a few days after she was born, many tests, photos, and various doctors poking and prodding at her. I remember her poor little heels were bruised black and blue from heel pricks to do blood tests. Finally, we were told… “Your daughter has a genetic skin condition, called “Congenital Ichthyosis”. I had no idea what it was, I had never heard of the word “Ichthyosis” before, yet I had a million and one questions. Questions that for the most part went unanswered for some weeks as nobody at the hospital had ever seen a case of Ichthyosis before, and some had not even heard of it. I tried to educate myself via the internet, but we all know how unreliable and confusing some of that information can be. To date, we still don’t know the type she has. We have been told though it looks like either a mild case of Lamellar Ichthyosis, or a little more severe case of Ichthyosis Vulgaris. We haven’t had genetic testing offered to us to diagnose the particular type, as we were told it is too expensive to do at the moment.
Bree was discharged from hospital under care from a paediatrician, dermatologist, ophthalmologist, geneticist, ENT & Audiology as well as physiotherapy to add to the list.
I’m not going to lie. The last 10 months have been hectic, exhausting and emotional. Appointment after appointment. Different creams and lotions for her to try. Most working for a period of time and then no longer working as well as they once did. One of our biggest concerns was her hearing. She had failed her Newborn hearing test twice, as well as numerous others outside of the hospital. After a draining ENT & Audiology appointment a few weeks back, we had her ears cleaned out completely, which has given her now perfect hearing. This will continue to be monitored for a few months to see how we go.
Otherwise, Bree is doing so well. Considering all that she has been through during her very short time with us, I have to say that she truly is a little treasure. No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. She has a beautiful and bubbly little personality already at such a young age.
We have been told numerous times now that as she gets older, there is a good chance that her Ichthyosis will improve also. I am hoping that this is the case. Don’t get me wrong, I do think about the years ahead. I worry for the stares, comments and remarks that she is going to face as she gets older. I am confident because of how much she is loved, and the support she will have, that she will get through it all, and be a better person because of it.
Bree is the youngest of three children. She has an older brother who is 5, and a sister who is 2, and they both adore her. I know they will be there for her no matter what as she grows up. They love to help me out with Bree. Her sister in particular loves to help me put Bree’s cream on, more so on herself than Bree at the moment!
For the first couple of months, when I looked at Bree, the first thing I would see is her skin. I don’t now. I see straight past it to the beautiful little girl that she is now and who she will be in the future. Ichthyosis probably did change our lives at the start… I was always worried when I went out with Bree that people would look at her and stare at her. Now, it doesn’t bother me whatsoever, it is what it is and we will deal with it the best we can!”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.