PARENTS THOUGHTS

“When your child is born you have hopes, dreams and great expectations for that child. You imagine
what YOU will teach him and all the wonderful places that you will one day visit and show him.
However, when you are told that your beautiful baby you patiently waited and planned for is disabled,
it is something that you cannot quite believe. Every parent’s worst fear – the fact that their child has
many problems that no doctor and no amount of money will ever put right has hapened and that it has
happened to you not to someone else.

At first you feel extremely isolated. Nobody that you know has a disabled child. All you friends and
family have healthy children and there is nobody to cope with your new emotions. One half of you
naturally loves and adores this much wanted beautiful child but the other half hates him for not having
lived up to your expectations.

When you have a child you have a great need to meet parents who, like you, have had these emotions
and who know how you feel. You no longer want to be isolated but part of the human race again.
You realise, eventually, that because your child has problems he doesn’t have the rights as a normal
human being. Not only is he robbed of being able to walk, talk, think etc but also he has no automatic
rights to the basic forms of education that he so desperately needs. If you want your child to have
portage, hydrotherapy etc you must fight your way through endless red tape. Local authorities
unfortunately keep the priorities of disabled children at the bottom of the agenda and any allowances
your child is legally entitled to are begrudgingly handed over to you at the end of a long battle”.

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“Being the mother of a disabled child, I must say that my life has altered in ways I could never have
imagined. At 16 months of age my baby doesn’t toddle about babbling ‘Mum, Mum, Mum’ or
‘Dad, Dad, Dad’ and he doesn’t touch things he shouldn’t. In fact, he lies on the floor because he
can’t sit up. Each week we attend a playgroup for support and it is a place I know that my baby will
get the kind of care and attention he needs.

He has physiotherapy, portage and hydrotherapy each week and, in between these activities, we fit
in numerous visits to three different hospitals when we have appointments. Sometimes there are the
unscheduled emergency visits when he has a convulsion or is ill for one reason or another.

I must admit, we have very happy times but we also have days when things do get too much to deal
with. Being parents of a disabled child is not the option that my husband and I would have chosen
had we been given the choice but, as we are, we make the most of what we have and enjoy every
precious day that we have with our baby because as the song says – Love changes everything”.

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“One of my worst moments was when our son had his first big fit. It was as if it wasn’t him but someone else. I ran around the house with him, not knowing what to do next. In the end, I just phoned an ambulance and the ambulance men took over. He was taken to hospital and they calmed him down.
I feel that when my son does get admitted into hospital, he is treated as a second-class citizen. He was desperately ill, in his own room, and at 1.00 am we were asked to leave the room for another child and we were just left on the ward”.

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“Our worst moment has been when, after 4 years without any fits and 2 ½ years off medication, our daughter had a 7 ½ hour fit in the middle of her 10th Birthday Party.
She definitely knows how to communicate her worries and feelings”

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“We were told that our daughter would have ‘severe learning difficulties’ on a Sunday night at the end of a two-week holiday. My worst moment was returning to work the next morning to be congratulated on the birth of my daughter (she was two weeks old)”.

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“The feeling of desperation when my daughter has to go into hospital and I feel that she is not getting the care and attention she requires and deserves”.

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“Our worst moment was when our son needed prolonged blood tests every half hour and they took blood from his head. Up until then he had been very calm about this, but since, he hates anyone touching his head for any reason. This could have been avoided if doctors and nurses had more patience and understanding and did not take the view that, if he can’t communicate back, he has no understanding or feelings”.

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“The feeling of desperation when my daughter has to go into hospital and I feel that she is not getting the care and attention she requires and deserves”.

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“We were very upset when we were told that our son needed an operation. The thought of the anaesthetic frightened us. He had been unwell for several months and no one seemed to know what was wrong. If only he had been able to tell us where it hurt and how bad it was, then perhaps diagnosis would have been quicker. I felt that I should have known that his increasing bouts of sickness were more than tummy bugs.
He had the operation, having his gallbladder and a testicle removed. He was very brave and we were nervous wrecks. He recovered quickly and fully – thank heavens! The staff were wonderful: doctors explained everything to us and nurses were gentle and efficient”.

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“Birthdays can sometimes bring on a ‘what might have been’ feeling”.

GOLDEN ADVICE

“Don’t harbour negative feelings: they’re natural and understandable. Don’t feel guilty”.
“I felt that it was essential to find out as much information as possible as soon as a diagnosis of my daughter’s condition was made. Although we cannot speak highly enough of the Consultant at the hospital, he was only able to provide Wolf Hirschhorn Syndrome. Our initial telephone discussion with the Founder of the Support Group left us with no illusions about the future and helped us start to come to terms with it immediately”.

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“You may feel that this is the blackest day – but it’s not! There’s going to be a tough road ahead but you’ll ride it and find that you’ll be amazed at the love, care and support that your child brings you and vice versa. Life is what you make it. You can sit there and feel sorry for yourself - which doesn’t help anybody least of all yourself - or you can grab the bull by the horns and try to be more positive.
You will get your bad days where you’ll probably cry and feel very sorry for yourself, your family, your child etc … but, it’s surprising where the strength comes from to carry on and make the most of your life. Yes – you have a handicapped child and Yes- you’ve become a handicapped family but - there are so many things that we can do now that we no longer need to be handicapped families, as such. With hard work, care, patience and, above all, love it’s surprising what we can do”.

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“Keep a diary – at first, when this was suggested to me I wasn’t too keen but accepted the diary. I found that pouring my feelings onto paper was very therapeutic, noting small achievements and emotional hurdles and that our daughter has achieved wonders”.
Contact other parents when you feel ready. Another parent told us that her child had enjoyed rough play from a very early age. Until that point we had been treating our daughter very, very gently. When we changed our approach her response was fantastic, she giggled for the first time”.

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“At the end of the day, parents know best. I firmly believe this now and would argue with anyone who tried to tell me otherwise”.
We have always encouraged our son to work. We firmly believe that the more you put in, the more you’ll get out. It is not easy and we doubt if it will ever get any easier. Some doctors have told us that we really should not be doing any exercises with him because of his heart condition. We feel that we cannot live our lives wrapping him up in cotton wool: none of us know what’s in store for us, so let’s make the most of life and enjoy it”.

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“Look at your child as an individual with his/her own personality and characteristics. They are only hampered by Wolf Hirschhorn Syndrome not taken over by it”.

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“In the immediate stages after you have been given your child’s diagnosis, it helps if you are ‘selfish’. Try not to worry about how other friends and family are coping. Give ‘time’ for yourself, your partner and your child”.

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FEEDING

What can go wrong and how can I help?

PROBLEM

Poor sucking - Try using non-standard utensils (e.g. Haberman Feeder, spoon-feeding, Doidy cup.
Adapting use of a normal bottle (e.g. enlarge the hole).
Apply pressure to cheeks while feeding.

Delayed repair of cleft palate - Try solutions above or bottle and prosthesis

Swallowing problems - Mad as it may seem, it is often easier to swallow thickened liquids.
There are commercially available products which your GP can prescribe.
Do avoid runny liquids with small lumps.

Poor chewing - Although it sounds obvious, you can only chew if you have a solid diet.
Salty or tart food may help.
Place food on teeth or gums at the side of the mouth.
Hold the lips together and rub the cheeks.
Support the jaw with your thumb under the chin and guide a chewing movement.
Try to stimulate the transverse tongue reflex.

Bite reflex - Never try to prise or pull the mouth open.
Avoid using metal spoons which may cause pain.
Wait for the child to relax and the remove what is being bitten.
Pushing the child up slightly may assist release.

Quantity of milk - Present little and often.
Don’t make it a bottle.
If your child is small size a full feed may not be necessary, but check with a dietician.
Ask your GP.

What if my child is tube fed?

Tube feeding can lead to various problems when introducing normal feeds. When a naso-gastric tube is in place, the normal process of swallowing may be affected making the child more likely to be sick during normal feeding. Therefore, try to introduce oral feeds when the tube has been removed (e.g. for cleaning).
Children who have overnight feeds miss the social aspect of regular mealtimes. Do try to involve your child in family mealtimes.

“As a baby, my son showed no interest in food and was unable to suck. He was tube fed for some time. At four years old, eating is now one of his favourite pastimes. He enjoys almost anything that is served up to him, especially chocolate bar ice cream.
My son was born with a cleft-lip and palate. We were given a Haberman Feeder bottle to use. This took some time to get used to but worked well. After his repair operation, I was advised that he should use a normal bottle. After 10 days of sitting in tears trying to feed my baby with all sorts of bottles which flooded milk out, I gave up and sat with an egg cup and a syringe all day and all night to get the milk down. After a few weeks I tried the normal bottle again. He sucked and sucked but the milk didn’t go down. I changed to different teats, made splits and holes, without any improvement. Then I found a miracle cure – a cheap soft-bodied bottle that you could squeeze a little as the baby sucked. Well, these bottles saved my life! They are not a special make, just cheap and soft. I passed this idea on to another mum in the Group and she found that they worked for her too.
I was given vitamins to add to his milk feeds but found that, if I added too much at once, he would vomit. So, I started to put some in milk feeds, adding the rest to milk used for breakfast and milk puddings.
My son would cough sometimes while being fed and vomit the whole feed up. He was sent for an x-ray to see if he had Reflux but he didn’t. I was told little and often as his insides were still very small at 8 ½ months. Whilst waiting for the x-ray, I was given infant indigestion medicine with feeds and, although he occasionally coughs and vomits, it is nowhere near as often as it was.
He doesn’t drink 5 ozs down straight away: it still takes time with a break in between. I tend to change his nappy or try to do some work.
He didn’t like baby food in jars or tins. I use powdered foods. He wasn’t keen on my liquidised dinners, so I gradually added mine to the powdered foods until now he just has my dinners. I bought things like baby rice to add to peaches or bananas, which all said ‘Just add water’ but I added baby milk – anything to add the odd calories.
I found it helpful to freeze dinners in ice cube trays then transfer to freezer labelled bags. Later, with larger amounts, I used yoghurt pots. I found that sweetcorn and baked beans suit him, the shells would go round and round in his mouth until they came out of the sides in the end”.

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“It is so frustrating because, before my little girl’s operation she ate well: after her operation she was tube fed and still is.
My daughter was a healthy birth weight of 7lbs 4 ozs. She was born with a cleft soft-palate and this was thought to be the cause of her feeding difficulties: she had an extremely poor ‘suck’ and was in Special Care for five days due to her ‘failure to thrive’. Once at home she was continually sick – often bringing up the entire feed (30 mls) that had taken at least an hour to give her (this was a distressing time for us all, not only was she sick but the sickness used to pass up through her nose due to her cleft palate thereby increasing her discomfort). It took her six weeks to regain her birth weight.
A Haberman Teat allowed us to feed her more easily although the process resembled force feeding. By six months she had a very negative response towards feeding and it was decided that she should have her soft-palate repaired, however, 30 minutes before the operation was due to be carried out, it was cancelled as the Anaesthetist decided that she was too frail to be administered anaesthetic – she was, by now, just under 10 lbs. It was decided, at this point, that she should be fed by us overnight using a Kangaroo Pump and a Naso-Gastric Tube. The Consultant made it clear to us that this was a long-term commitment on our part. The tube feeding involved passing a tube every night and attaching this to a pump and feeding bag.
This was the turning point in our relationship with our daughter as the crushing pressure to feed her was reduced. We felt more relaxed and positive in our attitude towards her and, for the first time, she began to gain weight (even if only in increments of 10 ozs per week). Over a period of months she began to exhibit signs of wanting her feeds.
While taking much of the pressure off us, the Naso-Gastric Tube did have it’s problems. These included our daughter pulling the tube up during the night causing her to choke and vomit. It also involved us in a lot of work as we were frequently up changing bedclothes and nightwear.
After two interminable years of this type of feeding it was decided , in an effort to reduce her dependence on it, to attempt to reduce it gradually and we began the process of supplementing her oral feeds with two bolus feeds: one in the morning and one at night – this involved passing the tube twice a day. She tolerated the process despite it’s unpleasant nature (she didn’t have much choice!). This continued for about a year. Eventually we cut out one of the feeds for 12 months until she was 4 ½ years old – then she weighs 30 lbs. All the time that she was on this type of feeding, she was encouraged to eat and drink normally during the day and eventually the tube feed was just used as a supplement to her normal oral intake.
Our daughter is now 5 years old, weighing 33 lbs and the great benefit is that now she is keen to eat and is feeding herself. This is messy but she really enjoys it! She drinks considerable quantities of water which reduces the possibility of constipation. Her diet is ‘normal’ and she constantly asks for biscuits and drinks and, since she began chewing about 18 months ago, she will eat most foods.
It is hard to imagine what our daughter would have been like, with regard to feeding, if she had not been tube-fed. We believe that, without that process, she would not be feeding as well as she is today. In retrospect, all the stress was worth it.
A Habernan Feeder is a specialised bottle designed to help babies with sucking problems. Other special teats and bottles are available”.

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When our son was born (3lbs 7 ozs) he was tube and bottle fed. Over a period of days more bottles were introduced. He was unable to suck and still cannot. Mucus from his nose and in his throat complicated matters. Feeding, therefore, took a long time and virtually meant shaking milk out of the bottle into his mouth. When we brought him home we were advised to feed him the same amount as a normal baby. After about a week, I went back to the hospital with my son because I was sure that he wasn’t taking enough milk. I was told that he was not dehydrated, that handicapped babies were often difficult to feed and keep trying. Being my first child and so small, I felt he needed every ounce of milk to build him up. I tried altering holes in many different teats, thickening the milk and putting it on a spoon. I tried just about everything I could think of. He seemed to be sick after most feeds, in short, feeding time was awful.
I had been told that children with Wolf Hirschhorn Syndrome were small; however, I did think that by persevering with what seemed to be never-ending feeds that his weight gain would be more than it was.
Introducing food wasn’t any easier. No matter how many people told me to slowly introduce graduated size lumps into food, nobody had told him that he had to swallow it. He stored it in his cheeks and gave it back to me in no uncertain terms.
After about nine months, I tried him with a cup with a spout, without success. It was then recommended that I try a ‘Doidy’ cup which has an open top and sloping edge, enabling the person holding it to see into the cup and control the drink. After many wet clothes he began to drink from the cup. He did not drink the amount recommended for his age and still does not but he kept it down, small amounts quite often. He wasn’t so sick and still gained a little weight – slowly.
Perhaps, if he hadn’t been my first child, I would have realised sooner that possibly he was being sick because he did not need as much milk as other babies and that small amounts more often might cut down the sickness. Then feeding might not have seemed to dominate each day. Also, if I had known that ‘weight gain would be slow’ really meant ‘weight gain would be hardly anything’, I would not have worried so much.
Fifteen years on and I know that persevering does pay off. I will never forget feeling that I could not feed him again, but I did. When I bring his meals in now he giggles. He still cannot chew but I simply mash up his food and he enjoys it. He is learning to hold a spoon and can put the food into his mouth with supervision. He holds his cup and puts it to his mouth, however, most of the contents end up down his jumper – but he is trying and improving all the time. I would never have believed that he would get this far.
Little steps, but for our son, real achievements”.

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“My daughter’s cleft-lip was sewn up at 7 days old, cleft palate at 5 months old and cleft fistula (which developed) at 6 ½ months old – up until then she fed with a bottle designed for babies with these problems. She fed fairly well, gaining weight on my breast milk which I was expressing in the hope that I could eventually breast feed, but I was discouraged by doctors who said her suck would not be strong enough. I stopped expressing, then the round of different milks started as she began vomiting. Her weight went down and tube feeds were introduced and her weight slowly climbed by 100 gms per month.
Finally, a stomach reflux was diagnosed as causing the vomiting coupled with colic. When she was a year old, we went to Great Ormond Street about the problem. Various medications for reflux, wind and colic were tried. Operating on her was out of the question due to the colic which would worsen post-operatively.
The vomiting has almost subsided now although wind is a force to be reckoned with. She has an orthodontic treat on her bottles with a hole large enough to sink the Titanic! She has solids and powdered milk due to a mild allergy to cow’s milk. Solids take a long time to get into her: she just holds it in her mouth for ages before swallowing. Lunch can take 1 ½ hours, small and often does not work as she is on such small amounts anyway – half a tin of savoury and half a tin of dessert.
I think that I might have to succumb to the suggestion of a Gastrostomy as suggested by her Speech Therapist. If I can get the feeding licked and the colicky wind pains obliterated, life would be easy.
During a stay in hospital for a routine assessment for my daughter, I saw the Dietician who suggested a supplement to give her extra calories because she hadn’t put on weight for a few months. We mentioned the sickness and were given an appointment to see a Gastric Specialist.
In the meantime, on the advice of the Dietician, we started making her milk strong and using a milkshake powder to favour it as she seemed to be going off it. For a few days she was fine but, as the week went on, she couldn’t keep anything down at all. We went to our General Practitioner who ended up sending us to hospital: by then the only thing that she could keep down was juice. At the hospital we gradually started giving her solids – no milk – and she got better. Within two days she came home and was eating like a horse, her whole personality was different, she was so much happier and wasn’t sick at all.
A week later we had our appointment with the Gastric Specialist. My daughter had a Barium Meal and probe put into her gullet for 24 hours to measure acidity. These tests showed she was suffering from Reflux and luckily it wasn’t too severe and could be treated with medicine. The Specialist said that he had seen all too many children like my daughter with various Syndromes and Handicaps who had reflux and were very slow to gain weight and parents and doctors had put it down to the Syndrome and done nothing about it. He said that it may well be part of the Syndrome but that doesn’t mean it can’t be treated. I just wish that we had done something about it sooner and then my daughter wouldn’t have had so much upset being sick all the time.
Unfortunately, my daughter’s sickness hasn’t stopped completely as we had hoped. I am going to find out if there are any different medicines we can try. Breakfast is a major problem: she sucks her thumb a lot through the night and seems to take in a lot of air.
If you are concerned about your child’s feeding, please ask your Doctor, Health Visitor or Speech Therapist for advice. Parents are sometimes told ‘this is all part of the Syndrome’. This may be the case, however, as a parent you need to feel that everything possible has been looked into.
Not drinking and eating enough can cause problems with constipation; sometimes talking to a Dietician is suggested.
Constant sickness can be caused by a ‘reflux’ and often a test for this is offered. It is sometimes recommended that various medicines to stop sickness, vitamins or flavourings could be beneficial. You must seek medical advice before introducing these.
As you will no doubt have been advised that children with Wolf Hirschhorn Syndrome vary considerably in their capabilities, this also applies to feeding. Many people find their child difficult to feed but some do not have any major problems at all”.

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“On finding out our first long-awaited child was born with Wolf Hirschhorn Syndrome, my husband
and I felt that our world had come to an end. We both grieved for the child we thought we were going
to have and came to terms with the child we did have. My feelings were so mixed up and confused,
I lived day by day; making myself believe that it wasn’t true and that my daughter would be fine and
all the doctors had got it completely wrong! I suffered from bad depression and it took me eight months
before I could talk to anyone about my daughter.

I was worried in the early days that we could lose her, so it was difficult to build a bond with her. Even
the littlest task like taking her out or to the clinic was so painful, people commenting on how tiny she
was and her failure to put on weight. Nine years ago little was known about Wolf Hirschhorn Syndrome
and talking to other parents of children with Wolf Hirschhorn Syndrome was so important, knowing
you are not the only one in the world with these problems is a comfort. I can remember saying
‘If only she would feed, things wouldn’t be so bad’. Nobody knows those feelings like another parent.
To an outsider, it’s only a little thing but, unless you’ve been there, it’s one hell of a problem.

Her first seizure at the age of 14 months was terrible. The feelings I had at not being able to do anything
to help her, the feelings of being out of control, seeing my daughter going through this, and on
admittance to hospital seeing what they did to her – to say the least I was distraught! None of the
medical staff knew anything about Wolf Hirschhorn Syndrome, I must have tried to explain 5 times in
an hour and when you are upset it’s not an easy task….”.

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“I think the most painful aspect for any parent about Wolf Hirschhorn Syndrome is the fact that it
cannot be cured. In most cases it just happened. At the very beginning, in fact, at conception, and that
the baby you’ve been carrying round for nine months is imperfect, abnormal, may not even survive.
It is not the baby you’ve been hoping for and yet it is her: a time for celebration – it is an emotional
blend of happiness and great sadness, one of the hardest things I have ever had to come to terms with.

When our daughter was discharged from hospital, the doctor said ‘take her home and love her while
she is here’. On reflection that didn’t give us any hope for the future and it clouded a moment that
should have been full of joy”.

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“The fact that Nana will never acknowledge her when we are out, she will never walk alongside her wheelchair”.

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“We couldn’t leave her, she had to be right beside us or else she screamed and screamed. When we brought her home from hospital the staff told us to take each day at a time and being told she would never do anything”.
“During the first year of our daughter’s life, I prayed on many occasions that she would die, releasing me from the emotional hell that I was experiencing in coming to terms with life with a child with special needs. The process was that of grieving – grief for a child whose life I had projected into the future but who had ‘died at birth’.
At the same time as trying to cope with grief, I was being drained by the demands of looking after the child that I did get and who gave nothing back in return for all the effort that we put in. I felt hate, anger and helplessness at times, intermingled with compassion for this little damaged person it was my lot to look after and I felt a terrible apprehensive guilt at my desire for my daughter to die. I mentioned my feelings to our Paediatrician who told me that he had had similar emotions after the birth of a handicapped child of his own.
Our daughter I now regard as one of the best and most meaningful things in my life and the warmth and happiness of her personality makes, in retrospect, all the early pain worthwhile”.

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“His first fit – any fit. We hadn’t been told that our son could possibly have fits; therefore, his first one was totally unexpected. When we realised that he was unwell, we rushed to the hospital. He was nine months old, he looked so small and the fit seemed uncontrollable for a long time. We couldn’t lose him now: we had all been through so much.
After a few days the effects of the drugs wore off but his left side was weak. It took several months for him to regain his strength and now, many years later, I feel that his left side is still slightly weak. Fits and illnesses always put him back but, given time, he recovers and regains his capabilities. I now keep medication in the form of suppositories at home for him to bring him out of a fit. Before I had these I felt helpless”.

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“Being told by the Genetic Counsellor that our daughter ‘would not amount to be very much, be a happy child who would spend most of her time on a bean bag’.
Also, taking her to hospital for operations, waiting whilst she had these and then seeing her in intensive care”. “Our worst moments were trying to explain to our parent’s about our son’s handicap. What made matters worse was the difficulty in getting one set of parents to come to terms with the fact that they have a handicapped grandchild”.
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“The fact that Nana will never acknowledge her when we are out, she will never walk alongside her wheelchair”.
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“We couldn’t leave her, she had to be right beside us or else she screamed and screamed. When we brought her home from hospital the staff told us to take each day at a time and being told she would never do anything”.
“During the first year of our daughter’s life, I prayed on many occasions that she would die, releasing me from the emotional hell that I was experiencing in coming to terms with life with a child with special needs. The process was that of grieving – grief for a child whose life I had projected into the future but who had ‘died at birth’.
At the same time as trying to cope with grief, I was being drained by the demands of looking after the child that I did get and who gave nothing back in return for all the effort that we put in. I felt hate, anger and helplessness at times, intermingled with compassion for this little damaged person it was my lot to look after and I felt a terrible apprehensive guilt at my desire for my daughter to die. I mentioned my feelings to our Paediatrician who told me that he had had similar emotions after the birth of a handicapped child of his own.
Our daughter I now regard as one of the best and most meaningful things in my life and the warmth and happiness of her personality makes, in retrospect, all the early pain worthwhile”.
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“His first fit – any fit. We hadn’t been told that our son could possibly have fits; therefore, his first one was totally unexpected. When we realised that he was unwell, we rushed to the hospital. He was nine months old, he looked so small and the fit seemed uncontrollable for a long time. We couldn’t lose him now: we had all been through so much.
After a few days the effects of the drugs wore off but his left side was weak. It took several months for him to regain his strength and now, many years later, I feel that his left side is still slightly weak. Fits and illnesses always put him back but, given time, he recovers and regains his capabilities. I now keep medication in the form of suppositories at home for him to bring him out of a fit. Before I had these I felt helpless”.
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“However difficult, try to take time for yourselves away from your child. It is easy to think that, because your child is handicapped, nobody else can look after them. Treat your child like any other because ‘what is normal?”. The best advice I would give to somebody is to have contact with people in the same position, to talk and ask for advice. I gave up, a long time ago, listening to the ‘professionals’. Enjoy your child: they will develop at their own speed when they are ready. I spent a lot of time in the early years pushing my daughter to achieve things but I strongly feel that, when they are good and ready, they will eventually achieve these milestones.
She has a smile for everyone, is a happy and lively little girl. A smile and a cuddle from my daughter means so much to me, they are very loveable and very special children”.

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“To remember that they are a person first and have a handicap second. They can give and accept so much love”.

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“You don’t have to be a ‘Super Mum’ and always cope. The one thing that one of the Meetings showed me was that we did not have to struggle to force our daughter to chew. It was more important that she ate, was well and happy”.

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“When your baby is diagnosed with Wolf Hirschhorn Syndrome it is probably the greatest shock that you will ever experience. Enjoy your baby because they will not stay a baby forever. It’s surprising how time flies and your baby will grow before you realised it. Try not to wallow in self-pity for too long. Enjoy your baby”.

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“When you talk about your child try to begin with the positive things about him/her”.

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“Be proud of yourself and your family. You are doing your best to cope with a situation that you would never have believed you could”.

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“Please make an effort to ensure that siblings lead the same life that they would have if their brother or sister had not been handicapped. Often this means planning ahead and isn’t always easy but it will help towards a happier family life”.
“Obviously essential life sustaining things have to be done daily for the children but we are often advised to do this, try that, to help them.
Family life is important as well and. If that means for a while the non-essential programme has to be left, don’t feel guilty”.

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What next?

Always introduce changes when both you and your child are well. All changes will take time: don’t be put off if you have a bad day.
These are only guidelines and suggestions. Every child is different and what works for one may not work for another. You may refer yourself to a Speech and Language Therapist at any time. Your Health Visitor will tell you to find one.
If you think you have found a good solution for any difficulty, share those findings with your Speech and Language Therapist who can then let you know whether there are any reasons why you should not solve the problem in this way.
Have the courage of your own convictions. “Experts” are not always right and, anyway, in dealing with your own child, you are also an expert – you know them better that anyone else!
Feeding – Parent’s views and experiences.
“Right from the start my child was a terrible feeder. I think I tried every brand of baby milk on the market but every feed was the same – half an hour to get 100 mls down and about half an hour to get a lapful back! When she started on solids there had only to be a tiny lump in it to get it all back.
As for feeding herself, she just didn’t want to know. She was nearly five years old before she would feed herself and, even then, she was very reluctant and wouldn’t eat anything that needed chewing. I was still using jars of baby food until she was seven or eight years old as it was the only thing that she would actually eat.
I can remember when she started school and they tried giving her ordinary dinners, she used to hold food up in the roof of her mouth and they would try to hook it out with the end of a spoon. Eventually, she was cured of that by not being allowed to go into the Hydra Pool unless she had got rid of it all, as bits of food used to come out in the water!
Even now, aged 13 years, she doesn’t really chew properly and prefers food that just slips down, although I think living in a boarding house during the week has improved her eating, they seem to have had more success with her than I have ever done”.

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“After struggling with various eating programmes for almost 13 years, we realise that our daughter is never going to be overweight! She has now reached the grand target of 2 ½ stone.
When she was feeding from a bottle (which she did for about 3 years), her main problem seemed to be the copious amount of mucous she produced through her nose which prevented her breathing and sucking. Feed times seemed to go on forever – one running into the next. We tried suction before meals but this was never very successful. Once she started on solids things did get easier.
She has a varied diet at the moment: she has a really good appetite and eats four meals a day. She drinks lots of milk for which I am grateful when she doesn’t want to eat.
School think that she should be able to chew and have things like sandwiches. While I think that this would be good, I feel that she wouldn’t eat enough to get nourishment.
The anxiety we went through when she wouldn’t eat the required daily intake slowly became less when we came to terms with the fact that, no matter how much she eats, she will never weigh the same as her peers. Now we offer our daughter dinner and pudding in whatever order she wants it and don’t worry if she refuses as long as she will make up for it at the next meal and, as long as the drinks are going well, that’s fine by us.
My advice would be – if in doubt mash or liquidise it”.

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Because of the amount of mucous my son produced it was suggested that perhaps he was allergic to cow’s milk. I will do anything to improve feeding and possibly alleviate his almost constant running nose. For about six months I tried using powdered soya milk. I didn’t feel that it made any difference and returned to cow’s milk”.

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“Feeding during the first year was the worst part. The first few weeks seemed to be devoted to feeding my daughter by bottle and expressing milk in between! Hours were spent trying to feed her a miserable 60 mls, however, the weeks went by and she gradually took 100 mls or more per feed. She was so slow and difficult to feed and yet we were told that she must put on more weight or she may not withstand her first winter (in fact she had less colds that winter than most babies her age and seemed quite robust). It used to take about 1 ½ hours for her to take only 3 ozs of milk then ages to bring up her wind. In fact, her inability to bring up her wind was probably one of the major barriers to her feeding unsuccessfully. We tried everything, in fact: gripe water and medicine prescribed by the GP – none of these really helped.
At 21 months she is having pureed food in a bottle, which has a teat with an enormous hole in it (designed by ourselves), and this is the only way that we can get her to take solids. It seems to be working as her weight has increased from 9 lbs 12 ozs to almost 11 lbs over the last two months. Great progress for our daughter whose weight had remained static at around 9 lbs for more than six months. She seems to thoroughly enjoy her pureed food and eats (or should I say ‘sucks’ from a bottle) almost anything. It’s amazing what you can do with a food processor. For example, Weetabix can be reduced down to powder which we mix with milk and liquidised banana so she can drink her breakfast rather than eat it.
We would love it if our daughter could take food off a spoon and have tried for a year without success. She totally rejects anything given off a spoon, whatever it’s taste or consistency. She doesn’t seem to know what to do with the food, except to push it out again. It often dribbles out of the corners of her mouth, however, she goes through the motions of chewing sometimes and will put a spoon to her own mouth occasionally but this gets very messy.
She is not distressed anymore by me trying to spoon feed her, in fact, she quite often finds it a huge joke and smiles sweetly with food all over her face, bib, hands and sometimes me. I’m sure we will get there in the end but it does seem to be a long slow process”.

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My daughter didn’t seem to like or enjoy her milk for the first year of her life and it took an hour to get 2 ozs into her. We tried everything, from spooning the milk into her mouth to cutting a cross-split into the teat and a squeezy feeding bottle so that we could squeeze it into her mouth. Looking back now it was an endless job of feeding which was all we seemed to do. She didn’t wake to be fed so we used to wake her every three hours, spend an hour trying to get her to feed, until she eventually fell asleep exhausted – and so did we!
The turning point came at a year old, when we put her onto the feeding cup – we haven’t looked back since. I think that she just didn’t know how to suck and putting her on the cup meant she didn’t have to suck, just let the liquid run into her mouth. We started spoon-feeding at 4 months and she took to it very well.
Now, at 10 years old, she can hold her cup and drink unaided, she can eat certain textured food but doesn’t chew, so we lightly liquidise her food. She can hold a spoon for a couple of mouthfuls but it’s still very clumsy and as she really enjoys her food she wants it there and then and prefers you to feed her. She will eat almost anything and enjoys mealtime immensely. She must have hollow legs as the amount she eats outweighs her size”.

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