Bethany was born prematurely at 33 weeks. When she was 9 weeks old she was critically ill & in hospital for a number of weeks. While in the hospital she contracted whooping cough & had a meningococcal fit lasting 55 minutes. We very nearly lost her but being the fighter she is, she pulled through. A number of tests & a brain scan followed & thankfully there was no lasting damage.
When Bethany was 3 we noticed a small patch at the back of her head with no hair. This was only the size of a thumbnail & hardly noticeable at all. Within a few weeks it had been joined by another couple of patches so off we went to the doctor. He was fairly dismissive & said it was down to stress. She was 3 what on earth could she be stressed about? The doctors said it could have been the stress of the traumatic first few months in her life. I accepted this, the hair grew back & I thought no more of it.
Bethany started school & carried on being the outgoing lively child she had always been. Her first assembly was an interesting day. I arrived at school to be called in by her teacher. Not a great start to school life I thought but let’s see what this is about. Bethany had decided that she didn’t want to sit through assembly & had got up to walk out. I questioned her as to why? ‘It’s boring’ Fair enough & wise words but something we all have to go through. I think though the school then realised how very different Bethany was from her 2 older sisters. Headstrong, outgoing & a real joker happy to be the centre of attention at all times.
When Bethany reached 6 she developed more bald patches. Another trip to the doctor who said again it was stress from starting school, said there was nothing he could do but gave us some steroid cream to see if it helped. It didn’t! Bethany had quite long hair at the time so I became quite adept at moving her parting & putting bunches in just the right place to hide where the hair was missing. Bethany seemed oblivious to what was happening & took it in her stride. She continued through Lower school with hair coming & going but becoming increasingly worse.
During year 3 I arrived at school one afternoon to collect Bethany from Art club. Mrs Chegwin came out of the class & asked if she could speak to me. I thought what now? I know she is a handful & so do you but what has she done this time? Mrs Chegwin however offered me a lifeline. She asked if she was always so full of beans & how did she sleep. I said yes, she never sits still, she is incapable of doing anything that requires concentrating for more than 10 minutes & sleep is something that happens for about 3 hours a night. Had I considered taking her off additives? No, why? Not that any of the kids had many sweets or processed food but it was not something that had crossed my mind. She said try it for 6 weeks & see what happens. I will forever be grateful to Mrs Chegwin. I had a different child! The school embraced the whole additive thing way before Jamie Oliver & the chicken nugget scandal. E-free week was a great success. It was difficult for Bethany though, imagine going to a party & being the only kid who can’t eat sweets or have fizzy.
Year 4, the last year at Lower school saw her enter Mrs Hill’s class. Bethany & Mrs Hill was the best combination anyone could wish for. She was the best thing that could ever have happened to Bethany. They had a fantastic relationship & she flourished. One of the things that Mrs Chegwin had identified is that Bethany was very clever. Mrs Hill made sure that Bethany was always stretched in class & never became bored. It was probably the best year of her school life. However halfway through that year it began to dawn on her that she would have to leave Lower school that summer & go off to the big scary middle school. More hair fell out than ever before. Clever ponytails really didn’t help & we had to invest in bandanas & headbands. The final few weeks were horrid for her & she was very, very unhappy at the thought of having to leave. Her last day was the end of the world & she sobbed for hours after school.
The summer holidays seemed to pass very quickly. We did in the holidays go to the doctors again. This time she saw the practice Nurse. Nurse Sally was very supportive. She explained to Bethany how she had also suffered with Alopecia as a child & had lost all of her hair. She told Bethany how that had made her feel but also said that when she reached puberty it had all grown back & now she has the thickest hair in the world. A light at the end of the tunnel though Bethany at 9 years old desperately wanted her periods to start!
The start of Middle school was horrid for her. No Mrs Hill, kids’ asking what was wrong with her hair, why had she shaved her eyebrow, older kids calling her “badly”. I went to school. Her form tutors answer, just ignore it! Great help. She really was about as much use as a chocolate teapot. Over the year I went to school on numerous occasions but nothing changed & Bethany continued to lose hair but this time it was going from everywhere!
I went back to the doctors in the summer & this time demanded they refer her to somebody. The Doctor we saw didn’t argue he asked why we hadn’t taken her to a specialist before though. I explained all the previous visits & the stress answer. What could he say. I knew from Internet research there was no cure but being under a consultant may help. The appointment came through & we went off to see Dr Burova at Bedford hospital. She looked at Bethany’s hair follicles. They weren’t dead so the Hair Loss was due to her immune system not stress as we had always been told. She gave her a blood test to check her iron levels, prescribed a mousse & some multi vitamins & booked us an appointment for 6 weeks. School continued to get worse as did the Hair Loss but at least we knew it wasn’t stress.
Over the summer holidays before year 5 Bethany lost most of her hair on top of her head. There was a very wispy bit at the top that just looked lost. She did however spend 4 weeks rehearsing for & performing in for a week a professional production of Annie with Vikki Michelle as Miss Hannigan. I went to both the opening & closing nights & she looked so happy on the stage. The costume department had made her a headscarf to wear so no lights bouncing off the top of her head. The finale with her singing tomorrow with the whole cast had me in tears. There was my baby on stage with the biggest smile on her face I had seen in a long time. It was great. We went to a wig shop that summer where we quickly found out that nobody caters for bald kids! There was a choice of 3 for children all of which were hideous. We went on holiday hoping the sun would help but she came home with a very tanned head & even less hair. A call when we got home though to say that there was a new kids wig called a Britney took us back to the shop & saw us leave £200 worse off. She wore it for an hour before deciding she hated it as it was itchy & looked false. Shame she didn’t decide that before I paid for it!
Bethany went back to school wearing a bandana permanently. People called her a pirate or Ronaldo. Neither of which she was particularly impressed with. We went back to Dr Burova for the results of the tests. Her iron was low so she was prescribed iron on top of the multi vitamins. We left the consulting room to head for the pharmacy. I was called back. Dr Burova sat me down & said I needed to prepare Bethany for losing all of her hair. I broke down. I didn’t handle that very well at all. I felt responsible; I was her Mum so I should be able to make things better. Not this apparently, this was outside of my control & nothing I could do anything about. I was powerless to help my baby! By half term Bethany had no hair on top at all bar about 5-6 strands. One Saturday in town she asked to go into the barbers where she had it shaved off. Her bravery luckily overshadowed me becoming a blubbering wreck in the corner of the shop. She looked so much better though. No wispy bits of hair & a gorgeous shaped head. However come the end of the half term holiday we had a problem. Bethany would not go back to school!
I called a friend of mine who worked in the office & her head of year who has a stables in our village. Luckily I was able to take Bethany into school on the Monday when there were still no kids in. Her now form tutor was fantastic. Bethany seemed to have formed the same sort of bond with her that she had with Mrs Hill so that reassured me. Both Miss Pilgrim & her head of year convinced her to come to school & offered a safe haven from the playground if it all got too much by being made an art monitor. That meant playtime could be spent washing out paint pots & softening clay rather than facing hoards of people. Year 6 also started a series of raffles for Alopecia awareness & held an assembly to explain what it was. The school have turned from being worse than useless when she first started into very supportive & protective. Any comments made are now immediately squashed & the person made to apologise.
Dancing on Ice this year brought Linda Lusardi back into the spotlight. An article in a woman’s magazine told of her work with WHITE CLIFFS & her Hair Loss after giving birth. I looked WHITE CLIFFS up on the Internet & applied for the foundation. Thankfully she was accepted & now she is now looking forward to having hair again. I am sure this will give Bethany back the confidence to attend more auditions. She is already talking about wanting to apply to Sylvia Young’s stage school since our visit to you………………..Watch this space!!!
Bethany’s fitting was on the 26th August 08, 2 days later Bethany hasn’t stopped grinning! Everyone who sees her cannot believe how fantastic it looks.
It was really sweet on the way home. She tapped me on the shoulder while we were on the tube looking quite concerned. I bent down & she whispered ‘Mummy nobody is staring at me!’ I always thought it was only me who noticed just how rude people could be. At times I had noticed grown adults actually pointing at her along with children laughing. Most times I assumed Bethany had just been oblivious to it.
My Dad is getting married in 8 weeks after 29 years of living with my Step-Mum. Bethany’s confidence appears to be coming back with her hair as she has offered to sing at the wedding! Dad is thrilled. Perhaps this will be the star of her wanting to audition for roles again.
When she goes back to school next week I’ll mail you again to let you know her friends reaction. The two she has seen already were absolutely gob smacked. Charlie just had to be prompted, as he looked a bit confused as to who was waving at him. He then blushed when he realized that he had told her she was beautiful!
I had to laugh this morning when I heard her walk into the bathroom & proclaim that her hair was a mess!