Chantelle

My name is Dawn Harris and I have a little girl called Chantelle who is now 7 months. Even during my LONG pregnancy I knew someth wasn't quite right, developing a blood clot on my lung halfway through, and with the baby lying transverse most of the time causing great concern.  She was finally delivered by c-section and weighed an amazing 9lb 2oz but I could tell something was amiss.  She had the strange cry we all know, in fact we called her the kitten for awhile! Her eyes were wide apart and she constantly slept and slept, not eating at all. As my other 3 babies were huge and good feeders I was alert to this.

I kept on at my doctor and health visitor who said she was normal (I thought I was mad at this time!)  Finally we were referred to our lovely consultant who sent off for the DNA tests and diagnosed cri du chat when Chantelle was 4 months old. In fact it was a relief to have a name.  Chantelle has 9 out of 10 of the major characteristics, an ASD (Atrial Septal Defect - heart defect), hearing  loss, curvature of the spine and very low muscle tone BUT she is the most loving and  delightful child to have. A real little scamp. I'm discovering that all of these CDC kids have a wonderful nature despite the problems.

She doesn't head bang so much now, just when really upset, and since the doctors sorted her acid reflux out she doesn't cry much either. She is my 4th child, so we're pretty busy and I've given up full time work to care for her. I know the future differs for all of these children but you always hope for the best don't you?

We have a strong faith, she comes to our church every Sunday and gets massive amounts of attention, but life has changed dramatically with her arrival and we have all had to make adjustments.  Here in South Wales in the UK, the support has been fab, consultants, health visitors, physio, speech therapy you name it, we've got it! I believe by bringing her on in the best way we know how, with early intervention and the help of her siblings, (Curtis 16, Chelsea 9, Courtney 7) she will have a far better chance at a better life.

Yes I have my down moments when she's refusing all solid food, or most often refusing her bottle as she has an oral aversion, or head banging, or refusing to sit and throwing herself about, not using her arms like they were broken, BUT, I am surviving, and slowly we are coming out of the long dark tunnel, managing better, coping more and trying to live like a normal family would. Please include us on your directory to let others see Chantelle....it encourages me when I read of other parents going thru the same.

 Thank you for your time, Margarette

 Best wishes
 Dawn Harris

 UPDATE SEPTEMBER 2004

I think Chantelle has that classic look of CDC, wide apart eyes, with no nose bridge just yet, and a tiny mouth. She still hasn't grown in head circumference either, making her look just like a new born prem baby! The only thing that gives it away is she is incredibly long with ballerina legs.  Her weight gain has been slow but steady and she now weighs 17lb 7oz which is just under 8 kilos.  I know most of us parents have a real hard time with the food issues....months ago it was recommended she had a tube fitted to help feed, but I just found it too distressing to look at and kept imagining she was in pain, so I asked if I could feed her my way.

My lovely Dr Falco (tall, dark, handsome, you get the picture....visits are a joy, lol) agreed that as long as she didn't lose weight I could feed her my way. It was an incredibly slow process at first, taking 2 hours each feed, I didn't go out, there was no time, but slowly Chantelle made progress from  bottle to solid food and mixed feeding. She hated the milk, so my dietician put her on Infatrini, a special all-in-one milk feed....and the amount of bottles I bought from specialised shops for babies with high palates etc,..before she settled on a really cheap one from a pound shop! She also hated tinned/baby jar foods, so for the first time ever I did all home made. My hubby cooks Sunday lunch, so he'd do a huge dinner and I'd blitz the dinners in the afternoon, making 14 in one go. 2 for each day. I knew that there was 5 veg/potato/meat and gravy in so I wasn't worried. She had custard/pureed fruit/semolina/yoghurt for puds.

I still can't get her to eat lumps in her food but for anyone having this problem too, don't worry bout it coz I've found giving finger foods helps train her with lumps, and once she gets into a routine of the odd lump or 2 you should be OK. I mean if she can eat garlic bread, choccy buttons, and all other stuff that she isn't supposed to have, I'm sure she's just having me on!! But seriously, if you're one of those contemplating a tube, think carefully....a little perseverance works wonders.

Body-wise, we were hoping Chantelle would be sitting by now....she can   manage a few seconds by herself, but we all work on this, specially Chelsea and Courtney who are desperate for her to sit so she can play better games. I guess you have to realise that they were expecting a normal baby as well as us, and not being able to do normal stuff with her, such as feeding/walking/playing has hit them too. But we all try and do a bit of physio with her each day.  She's just been fitted for tiny training shoes to help her feet stay flat as she is forever pointing feet, and also a standing frame to encourage her to stand straight instead of bending.

 Her lower body is strong and she tries to use her feet/legs to play with her toys instead of her hands. Her upper body has always been weak, so hopefully this frame will encourage strength. One of her hands still 'fists' most of  the time...hand training splints worked well in early stages and has pulled  one hand straight but she's now at the stage where she can take them off of her own accord, so we've given up on that one.

 Her tummy valve is still lax....gastro reflux continues to be a problem, and the medicines are harder to give as she is so strong and it literally is a battle. The doctors are considering putting a little tube in her tummy to administer the meds.

Head banging is still profound, mainly at night when she is tired, but also upon getting excited at seeing people or hearing noises. My health visitor has made contact with a child psychologist who is going to contact me with guidelines to this bizarre behaviour so I will pass on any info she gives me, as I know it is a major problem in CDC. We are thinking, if it carries on, about getting a padded wall mat just to protect her.

Her hearing has improved, she has full hearing, and her eyesight was fine at the test. She does have a hole in the heart, but the heart doc wants to wait and see before he jumps in with surgery. Her sleep continues to be a BIG problem. She is totally restless and rarely  sleeps thru...hubby has taken to putting her in bed with us in middle of night but then neither of us are having a good nights sleep, and she doesn't  care, coz she can sleep in day!  Dr Falco gave us melatonin, but I have to say it made no difference.

Speech wise, she can say dad (why do they ALWAYS say that first? it's so gutting!!) But I think on looking at other kiddies she is at a 6 month stage really, and I know that with each passing month she falls further behind. I do get a little frustrated when she has a toy in front of her and she just looks at it half the time....but we're working with her all the time.

I found respite care myself, as the council here had no one for her...and they are just brill. Five kids themselves, but all in school/work in the day, so just George and Tracy with Chantelle for the 2 mornings a week they have her, plus they go to my church and I do feel a real peace when they have her. No worrying, I just get on....mainly packing as we're moving for second time in a year!!  BUT, bad news aside, Chantelle is a very happy baby.....rarely cries, giving  kisses now to anyone who wants one, claps hands for Nanny, and is a real  grandma's girl, and I have to say most people tell me what a contented baby she  is. It is MUCH easier than it ever was, so for all parents out there,  pulling their hair out in the first year, it's OK. Go with the flow, don't expect too much, lean on people when they ask.

Our marriage has not only survived this, but has become stronger than it ever was....so there is HOPE. Believe  it. And love that child more than anything.

UPDATE FEBRUARY 2005

Just thought I'd update Chantelle's page with how she is doing and hope it encourages others.  Chantelle is now 17 months old and has finally learnt to crawl!! She was very tentative at first, only taking it slow, but she is now gathering pace and roams from room to room, or generally stays in the lounge and plays with her toys, occasionally climbing up to the TV and trying to pat whatever is on TV. (When we were watching the snooker, she tried to grab the bright balls off the screen). But this new mode of movement means she is a lot more content in herself as she can get what she wants when she wants it.

Walking is a good way off yet but she has been plastered for splints which are being fitted next week and will keep her feet in a flat position instead of on tiptoes and pointing outwards.  She can now stand up straight instead of leaning forward, so any parent despairing of their child looking like a puppet on a string, be patient, they do get there. When the splints are on she should be able to use a walking frame to hold onto (I call it a junior Zimmer frame) and learn to walk in the same way as an

able bodied child would use a trolley. When Chani takes her first independent steps, we have decided we will throw a party!

 Speech-wise, she goes thru phases of saying things then not saying anything for awhile. She can say Dad, bye bye, bear, ta, mama, and mum. However what is more important is that she understands a lot more than those few words. She understands if I say "wipe your nose" and promptly does so, or have a wash, wash your hair, etc....and this is important as it shows she can follow direction. She can also use sign language to say thank you, and other simple expressions.

And for all of you out there who are saying, "yes, well my baby has a large deletion and is a severe case" etc...we had the FISH analysis back 2 weeks ago that states she has a very large deletion and is in the severe bracket. SO there is hope and yes you do have to put in LOADS of work but it pays off.

Socially, Chani is more interactive and regularly gives kisses out and hugs if you're lucky, even managing to go to respite overnight on a weekly basis! Here is a tip for those considering respite care but are holding back....DON'T!!!!  Respite was the best thing we ever did. It's hard at first, especially if they cry, and when you think that only you know how to look after your child.  It's true, only you do know what's best but your respite can learn and even if they do it their way, it's still good. Gradually you get used to the fact that you can have a bit of time away from caring....and let’s face it, caring for cri du chat kids is full time and full on. You never seem to have a minute without them, even at night when they're in your bed! So build up the care as you're going, couple of hours to start with, then half a day, building up to the full day...once you have experienced that sense of freedom to either garden or go browsing or go to bed(!) then it becomes something you can embrace. And so does the child, who comes to accept that this house they visit is fine and the carers are people they can love and in the end, the child learns to anticipate it.

Remember that your child likes consistency, so try and provide care on consecutive days.  It took us quite a few months to build up to overnight care, and I only gave in because George (the carer) nagged and nagged me and got on my nerves! So on New Year's eve I sent her to stay over, which the respite family thoroughly enjoyed specially being New Years eve, it seemed significant. I missed her terribly...my hubby works New Years Eve so he was absent. My mum stayed and I had my 2 girls and nobody could mention her name coz we missed her that much. But I decided that it was useless to mope, so we went to the club, played pool and darts, and did stuff we couldn't have done with Chani.

After that, it has become a regular Fri night sleepover...it means I can teach dance, come home and allow my 2 girls a friend each to sleep over, watch a DVD uninterrupted with sweeties and have a good nights sleep. It also means that I look forward to the time I pick her up and have renewed enthusiasm to start another week of caring for her. My hubby isn't so keen as he misses her, but it's me that does most of the caring and I feel I deserve it!

 So I hope I have given some of you hope/inspiration, CDC kids take everything at a very slow pace as I have found out, but it is such a joy when they finally conquer something that has taken months of hard work.

 UPDATE MARCH 2006

Chantelle is now 2 and half and boy is she naughty!!  I thought she might be walking but as I write this she is still just taking tentative steps across small paces and usually puppet like, as well as falling most of the time...but it is improvement. She has had both legs in plaster for 2 months to try and correct the positioning of her feet, but they are off now and splints are back on.  She's taken to crawling like a monkey, hands and feet on floor. She's pretty quick tho!

I long for her to walk and be able to follow me about doing every day stuff.  Her hands are still not working properly, she always uses her middle finger when switching buttons or moving objects and my son thinks this is hilarious as he's gotten her to give the middle finger up!

 She loves to go on the trampoline and would spend all day in the garden if it were possible. If she could walk this would be much better, but as it is, she just crawls everywhere.  Since my last update, our family dynamics have changed. My husband and I have started divorce proceedings but this has nothing to do with Chani or the demands she makes.  However, I am now her main carer and trying to run a large house and family on limited money is hard.

 The carers she had before have moved 60miles away so I had to get a new carer involved as well.  Chani's godmother now has her 1 day a week thru Direct Payments and my mum does 1 night a week, plus visiting in the week, easing the burden.  Although my 18yr old doesn't need me so much, Chelsea and Courtney are now 9 and 11 and miss out quite a bit on individual time.  I'm glad to say the divorce has not affected them in fact they are more disciplined now.

I too have given up a lot to do with work, church activities, voluntary work and counselling but I have to make my family my priority right now.  Back to Chani.....her sleeping is still not brilliant...I've tried everything...new toddler bed in her own sensory room, sleeping away from me...different bedtimes, but even though I persevered, she always ends up in my bed, pulling my hair to get to sleep and she still doesn't fall asleep alone. I find this particularly difficult as I have no wind down time for me.

We are a busy family, music, clubs etc and we might not get in till 7 or 8pm so her routine is late but she doesn't nod off 'til 10pm most nights. Then maybe an hour or two later she's awake, just checking if I'm in bed, then restless thru the night, kicking etc.   I'm trying to find a time that suits us all to start winding down. 

Eating is still a problem...she still has pureed dinners and tea, rusks and baby cereal mixed with Infatrini for breakfast...she still gags if she finds a lump in the dinner and despite my best efforts, cannot eat proper solids.  I do give her finger foods, garlic bread, snacks, fruit, toast and she enjoys the holding but rarely eats it. She now weighs 25lbs.  She's very tall and skinny, pretty with long blonde hair and big blue eyes.

Behaviour-wise...well...she head-bangs when tired or angry and it only takes something small to set this off. She cries if you ask her to say sorry, she freaks out at the sound of sellotape or plaster or carrier bags.  Many things scare her, and she's like a frightened rabbit! She is very destructive...most of my bowls have been smashed, the dog bowl was smashed this week. She tears the newspaper, rips books, licks radiators that are on, deliberately opens the hot cooker door, touches hot taps, tips soil and stones into my bath when I turn my back, eats pebbles and sand, lobs the snooker balls off the table onto hard surfaces, pulls the dogs ears coz she knows he hates it, pulls all my ironing off the stairs, puts the clean washing on the floor, switches the hoover off when I'm hoovering, pulls hats and mittens and sox off, she bites, and pinches and pulls hair.

Sometimes I spend all day clearing up after her and I think when will all this end? She is so strong and if she doesn't want to do something, it’s hard to get her to do it.  She has no meaning of rush or hurry to get dressed for school and as I'm dressing her, she's undoing it all...put one splint on and the other is being undone, takes her coat off when I'm putting her shoes on. The list goes on.

BUT because she is so impish when she does all of this, and so delightful to look at, you just laugh and you can’t be angry with her.  She goes to special needs playschool two mornings a week and normal playschool on a Wednesday morning. Tuesday is spent all day with her carer and then Friday and Saturday are my lazy days with her....watching Teletubbies and going on the trampoline. Sundays we try and get to church.

 So my life has changed...it's hard but she is so loving and you could just eat her!! I hope all is well with you and God Bless anyone living with a cri du chat kid....may the Lord give you the strength and the humour that you need!

September 24th  2007

We were very sad to learn of the death of Dawn Harris from Wales in the UK on Saturday morning 22nd September. Dawn leaves a son, Curtis, and three beautiful daughters Chantelle, Chelsea and Courtney. She worshipped her children and was a wonderful, devoted mother to them all, most especially to her daughter Chantelle who has cri du chat syndrome.

Chantelle's grandfather wanted us to know that Dawn had been able to come home from the hospital for a few hours on Wednesday the 19th September for Chantelle's fourth birthday but that she deteriorated after that and sadly passed away on Saturday morning. He said that Chantelle is a loving child who gives big cuddles and kisses and now happily attends a special school Monday to Friday.

 I know there are many parents in the UK and other countries who emailed Dawn and derived great comfort from her support. She will be missed not only by her family but by those of us around the world who were touched by her kind heart, her strong spirit and her devotion to her child.  Dawn wrote that she hoped to give both hope and inspiration to other families and I know that she achieved this. Dawn's story and the photographs on Chantelle's webpage show her obvious joy and love for Chantelle and will continue to give hope and inspiration to families around the world whose children are diagnosed with cri du chat syndrome.

Margarette Christie