On Being A Parent

My Courageous Daughter Caitlin
By Caroline Kehoe

Wexford, Ireland

My daughter has had a permanent form of hair loss called hypotrichosis since she was a small baby and I would like to introduce her to you. Her name is Caitlin Ellen Kehoe. and this is her story.

In 2004 we brought home our beautiful baby girl Caitlin. She had jet black hair, big eyes, and sallow skin. Caitlin’s hair began to fall out almost straight away and by the age of six weeks, she was totally bald. We weren’t at all concerned as most babies lose their hair but when it hadn’t grown back by her first birthday people began to comment on her baldness.  We had never heard of alopecia areata, so the doctors did lots of tests for other diseases and possible reasons for her condition. A pediatrician in our local hospital thought it might be a very serious illness called ectodermal dysphasia and this scared the life out of us as it would mean our perfect little girl would have developmental and mental problems. We spent months crying every day until we had our consultation with the head dermatologist in Ireland – Dr. Alan Irvine, who told us it definitely was not ectodermal dysplasis and that other than having no hair on her scalp, Caitlin would be perfectly healthy in every other way. It was actually a massive relief to hear it was a permanent form of alopecia. After they finally diagnosed alopecia, we learned there was no known cure. At the same time, we found out the disease would not disable her in any physical way.

We didn’t know how we would help her cope emotionally. So we focused on just what the doctor said — that she could do anything in life that she would like to do. We decided not to treat her differently or make her feel embarrassed or challenged by her condition. In her presence, we told our family and friends that, while Caitlin might never have her own hair again, she could become anything in life that she chose to become; she could go to school and grow up to be a happy, healthy young woman.

That was when my search for wigs and support began and I have to say it was a very lonely and isolating journey.  I quickly realised that there was very few options available in Ireland at that time and even fewer options for children with hair loss. I spent hours and hours in front of the computer every night researching wig caps and hair types and trying to find another family in the same boat. I longed to talk to another mum in the same situation but there were no support groups at that time like there is now. As parents, we felt very alone and had nowhere to turn for support.

The lowest point for us was when she was aged 2-3 as people would stare at her as we walked down the street. Some with pity in their eyes as they assumed she was sick with cancer and others stared at her as if she was an alien and nudged their friends to look. I spent my time searching peoples eyes to see how they were reacting to my little girls lack of hair and it began to eat me up inside. I had a constant knot in my stomach every time we went outside and I felt so powerless as I couldn’t protect my baby from peoples ignorance.

Caitlin got her first wig ( a dermalite ) when she was 3 years old and it really suited her and she got used to wearing it straight away. Shaving off the few strands of hair that she had proved to be a very upsetting experience and I grieved for the hair she would never have. Children’s heads grow very quickly so we had to order a second dermalite wig after a few months and this arrived a few months later. They are custom made to fit the Childs head perfectly and are made using European quality human hair and cost about one thousand Euro. We were so happy with the first one that it never crossed our minds that the second one would be any different. The second wig was ill fitting, frizzy, bushy and dry. I burst into tears when I saw it at the wig salon. Even more upsetting was the reaction of the owner of the salon who specialised in wigs for necessity wearers !! I was told that Caitlin’s head must have changed!! Bearing in mind that the wig was far too big for her I explained that her head couldn’t have shrunk !! I was in a state as Caitlin was due to start big school in a few weeks time and these wigs take about 4 months to make. It was then we were brought down to a local clothes alterations shop where the woman who owned the wig salon took the wig off Caitlin’s head and asked the lady at the sewing machine to sew a seam in it to make it smaller !! I was in such shock that I didn’t even stop this happening to my little girl as she stood there humiliated in front of strangers. Needless to say, the wig was still of no use to Caitlin and we were told by the wig salon that they wouldn’t be dealing with children for dermalite wigs anymore and off we had to go home. I couldn’t stop crying and didn’t know what to do. I had to report the wig shop to the HSE to get a refund which we eventually received a snotty letter. It’s an experience that should never have happened and I hope it never happens to anyone else.

Thankfully I happened to find a representative in Dublin (Audrey O Hara of Freedom wigs) for a special type of suction wig that is custom made using a silicone base and excellent quality human hair in New Zealand. A plaster mould was made of Caitlin’s head and this was sent off to New Zealand and four months later a fabulous suction wig arrived in Ireland for Caitlin.  That day our stress melted away. I’ve never seen any wig so realistic. The scalp of the entire wig is tinted to match her skin colour and she could wear her hair up or down. Caitlin never had to worry about her hair falling off as the suction is secure and can only be removed by inserting a finger to break the seal. Caitlin can swim, tumble, do gymnastics, you name it! , in her wig.

She became active in many schools and after school activities and programs.  She has always amazed me by being confident and happy in her own skin. She . Her friends not only accepted her but never treated her any differently.

But you know, there are always those who like to hurt others to get attention. And where Caitlin’s hair loss was concerned, they made no exception. One day in school a boy in her class pulled off her bandana that she sometimes chose to wear and laughed at her. I had not gotten a call, so I didn’t know anything. Later that evening she told me that she was upset, not that everyone had seen her without a head covering, but because the boy had taken the choice of when to show her head away from her.

Caitlin has since moved school for logistical reasons and we educated each class on alopecia by showing them a  DVD entitled “alopecia-why my hair falls out“, I did a talk with the kids in each class and the response was fantastic. Knowledge is power and if children understand what alopecia is they tend not to tease or make hurtful remarks, In fact, they are supportive and caring and treat her like any other child.  We also sent a letter the parents of each student explaining to them about Caitlin’s condition and asking for their support in educating their children about it. Caitlin wrote a  lovely little note with photos of her with and without her wig to each student in her class which we posted the week before she started in the school

She described her condition and how and when her hair loss happened, and she explained that alopecia areata is not like cancer, that she can do anything anyone with hair can do. She said that the only time her condition hurt was when people talked about her, instead of to her. She said, “If you want to know why I don’t have hair, just ask me, then let’s get on with other things.”

She also said “This is me, but it’s not all of me. I am many other things too. I’m also a happy person and I like learning new things and being with my friends, just like all of you. But you won’t know that if you only look at me and think about the loss of my hair.”

I believe it’s important for parents Caitlin has not had a problem in school again. She has made a lot of friends, and a lot of young people have learned about alopecia areata and its limited effect on a productive life.

We have met so many wonderful people through the help of Liz Sheil , the founder of Alopecia support Ireland and have a wonderful network of support. We go to the children’s alopecia camp run by BeBold.org in the Uk every summer and Caitlin has made many new friends with alopecia.

Over the years I watched her gain self-confidence. She has appeared in the local newspaper and on TV as a spokesperson for people with alopecia areata.   I’m so proud of her.  She has come a long way in dealing with not having hair.I believe it’s important for parents to feel that their child is okay just the way he or she is, hair or no hair. Children’s opinions of themselves are shaped by how they think their parents feel about them. If parents even hint that their child is damaged or is not quite the way he or she should be, the child will adopt these same feelings. Everyone is unique, different from one another in some way. To feel that everything would be okay (or better) if only the hair would grow back sets up a possibility for long- term disappointment. If the hair grows back, it’s wonderful, but you never know if it might fall out again. To count on something so unpredictable for self-esteem could be damaging. I suggest finding (or starting) a local support group and attending with your child.  We have attended support groups and summer camps. It was meaningful for Caitlin to meet other people with alopecia areata, mostly adults, but also children, carrying on normal lives.

Today, Caitlin is a healthy  7-year-old, a beautiful, strong, confident little girl who had the courage to take her wig off on national TV as she talked about alopecia to help others with the condition.

She is a very loving child, who is loved and respected by her friends, her family, and classmates. She made me laugh the other day when she said “ God made only a few perfect heads…..and the rest he covered with hair !! “

I hope this story helps other young people see that their life is all up to them, as it should be.

Alopecia areata doesn’t have to change a thing if you don’t want it to.