Neha is a new mum to little Alina who has Ichthyosis (EHK). She lives in Cairns, in tropical Australia.
Her story shows the initial desperation of giving birth to a baby with such a rare and severe skin condition. Lives are turned upside down, and there can be strain on relationships.
Neha also writes of how hard it was to hear people's platitudes. Platitudes are insensitive, no matter how well intentioned they are. The assumptions made and advice given to Neha when Alina was a newborn was also very hurtful . Her story is a good lesson in what not to say to new parents of a child with a disability.
I want Neha and her husband - and all new parents of children with Ichthyosis - to know that it will get better. And I think, in nine months, Neha has seen that it does.
Meet Neha and Alina.
"The story is of my 8 month old Alina who was diagnosed with EHK. We have to get the biopsy done again as we’ve been told by a dermatologist in Sydney she wasn’t a colloidal baby but has Ichthyosis.
22nd August, I started having contractions, I knew my baby didn’t wanted to hold any longer, even though I was due on 14th September 2013. I came home after spending a night at the hospital. 25th August, 11.20 am my water broke. Funny my 4 year old child thought I peed in my pants. We rushed to the hospital where I was in labor for few hours and finally rushed for a caesarean at 9.30 p.m.
At 9.45 pm our little one was born. We named her Alina. No one showed her to me. The doctor said to me "she is gorgeous just like you". I kept asking if I can see her. They showed me a glimpse of her. As I was drugged up all I could remember was I thought something wasn’t right. All I could remember was as if I saw something was boiled and overcooked.
After few hours they took me straight to the intensive care unit. It was hours and I haven’t fed my baby yet. They helped me nurse Alina and explained to me that your baby is a collodion baby and has Ichthyosis. The same night I was given few printed papers to read about colloidal babies. All drugged up but still stretching my eyes to read what they gave me to read. All night I tried to read few words but kept falling asleep.I remember I was trying to google it and the pictures Google showed was nerve breaking.
I don't remember anything from that night until after few weeks my husband showed me pics how Alina was born.
The next day when I went to the intensive care, Alina was in an incubator without any clothes or nappy. And I could see her skin was looking a bit different. One of nurses explained that they don't want to wrap her or touch her as she has a rare skin disorder and Doctors are still getting all the info together for it. I requested in tears if I could hold her and she replied "why do you want to handle her fragile skin. You should only hold her if you want to breastfeed?"
It felt as someone was teaching a mum to have a hard heart and stay away.
Team of dermatologists came to see me and tried to explain about Alina’s skin condition and stating it could be a lifelong problem. I repeatedly kept asking same questions, stating when can we go home?, and when will she have her baby skin?.
I was asked to look at the Foundation for Ichthyosis and Related Skin Types (FIRST) website. The heart denied it, I truly thought at that stage doctors have been mistaken. I remember all night I use to sit in Intensive care looking at her and thinking God cant do this to me. Surely the skin will peel off once and she will be fine. I kept asking the doctors and the nurses the same questions repeatedly everyday. The docs wont reply much but just say you will have to wait and watch.
The third day the dermatologist and paediatric team decided to wrap her body from neck to toe in special bandages. I don't remember a single moment when I didn’t had tears in my eyes. Never had that courage to stand with the nurses and watch them undress the bandages. A very tedious and hard moment to see your newborn baby in pain. I use to run away in tears and tell my husband I cant watch my baby in pain.
It felt as if the world had stopped, or the our lives have turned upside down. All of a sudden I started questioning myself why did I had so much trust in God? The doctors then suggested me that I start learning how to do bandages so we can go home in few weeks time. I would do the bandages, bath her with help of nurses but thought maybe it won't last for long. Tears never stopped and I was cursing God thinking how can he be that cruel to babies. All the nurses and doctors hugged me saying "You're doing a great job, Mum”. I used to reply, "I don't want to do this great job. No one wants to".
I was discharged from the maternity ward. I hated the feeling that we wont take our baby home with us. Coming home was like a torture as looking at her nursery, we didn’t knew when we could bring Alina home.
There would have not been any nurse, doctor or the pharmacist who didn’t hug me and gave me moral and emotional support. I am very grateful to them all.
On 5th September 2013 we bought Alina home, a day before my 30th Bday and continued with the same routine of bandaging her. We were still lost and had a hope that maybe skin will shred just once. My mind and heart was all lost that I didn’t remember my birthday.
I have people sympathizing with me saying you should be thankful as some kids die straight after birth and some die young. Atleast your baby is surviving. No words I had to reply these people but I kept thinking this is not what I wanted to listen at this hard time. People thought I was overreacting as its only dry skin and can be easily managed.I have lived my life with a Skin Disorder too - Vitiligo. I was suggested that I should think my baby has the same disorder I had. But no that wasn’t the truth.
I was told this is the reality of my life so I should accept it, I hated people telling me God gives you pain that you can bear. This made me more self conscious towards sharing how I felt and I stopped sharing myself with others how I felt. The nurse at Alina’s first immunization said to me "What a nasty looking skin your baby has. Try to spend some time to moisturize her". People love giving suggestions without thinking every Mum will do her best for their baby. I replied politely saying she was born with Ichthyosis.
It was a stage when I didn’t wanted to talk about it and left myself with God. All I did then was pray God begging him if he chose me to be that special parent, then give us the strength to face it. Make us strong that our hands don't shake when we dress her up and we have smile on our face when we think about this so called skin. Ichthyosis. I still hate the name and I still hate to Google the images for Ichthyosis.
There was silence between me and my husband all the time, as every day was new to us. We had to manage with skin blistering, infections and a lot more. We were still learning. Doctors never answered to our questions. They sat with us on Google to search what we could do. It's amazing when you sit on Google all day and night to collect all the information and then at dermatologist appointments you are sharing what you read on Google. And educating the doctors too.
Maybe God is somewhere who listened and we started getting all this strength? we started searching and reading about it on the internet and came across this wonderful group on Facebook. I have to say Carly was an inspiration to me. I messaged many parents discussing how I felt. I cried many night for months but discussing it with other parents I could see light at the end of the tunnel that kids live a healthy normal life.
I work for a great employer who offered me to work from home few hours if I want to divert my mind. Very grateful to him.
We as parents decided that we have to stop thinking about the future and take each day as it comes. I knew life won't be that easy but I was now prepared to manage it with a smile. We as a family are a strength for each other. I have lived life with Vitiligo and have an experience how the world can be cruel to you. They wont accept your skin losing pigmentation, and I knew it wont be that easy for Alina if her mum loses all her strength that she has showed all these years.
Its nearly 9 months now and I believe we are a complete different people. Alina’s smile makes us feel complete. She is a treasure who completed our family. I feel Ichthyosis is not a big deal and doesn’t stop us enjoying and living our lives beautifully. It's taught me there are a lot more sorrows in this world, and to be grateful to God for all you have been blessed with.
It had opened up my eyes towards life. Before Alina was born I didn’t even knew that people suffer from all these different rare diseases. I never knew life is not a bed of roses for everyone.
We have taught our elder daughter to care for Alina's skn. She is very gentle with her and loves to cuddle her. I can now say life is complete and could have not been much better having two beautiful looking girls. We live a normal life as any normal family would do without thinking much about the future. Nor do we compare Alina with any other kid as we know she is our special baby and God has chosen us the special parents as he knew we will improve our lives and have a learning curve for good.
Every day is a milestone and every smile of Alina is precious as gold.
I don’t know what future beholds for us, but we are happy to take one step at a time and enjoy life with a smile as a complete strong family.
Going back the memory lane I get tears how stronger person my little 9 months old has made me. I would have not shared my story thinking people might think I am overreacting to dry skin. But I am very glad I did. It makes me a proud mum of my gorgeous little treasure we have been blessed with. I am grateful to God for blessing us with two most gorgeous girls."
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.