MACS Stories

The Stories and Poems page has been split due to the large number or articles. To go to the Poems page use the button on the left or click here.

This page contains stories that have been sent in to us by some of our members. Have a scroll down story lane or choose one from the menu....

Liz Phillips a recent member to join MACS has written about her experience in bringing up her son Sam.

Sam will be 18 at the end of July, and until I read about Peter's (Chairman) little boy in our local newspaper, I was unaware of your organisation, and was totally unaware that there were other children with a similar disability as Sam.

When Sam was born he looked perfect, but when they took him away to be checked over they told me that one of his eyes would not open. They said he did not have proper eyelids, so they would operate to open up the eye. That was the first of sixteen operations all before Sam was 2 ½. They operated and told me Sam's eye had not properly developed, it was just a white eyeball, no iris, pupil etc. They also told me they had checked him over for a more sinister thing wrong with him, as faults usually occurred in two's. Just what you want to hear when you have just had a baby!

The surgeon said he had not come across a deformity like Sam's before and could give me no explanation as to why it had happened. Each operation consisted of opening up Sam's eyelids and placing a large plastic shell in the front with a view of trying to keep the lids open. However, the cut reacted as any normal cut and tried to close up. Frank and I had to prise his eye open every day (just after it was operated on, can you imagine how we felt hurting our own child). It was just awful. In the end the eye just closed up again. We went through this horrendous ordeal sixteen times, and as Sam had become totally mistrustful of adults was late in speaking and so shy we said "enough is enough".

They did admit they were fumbling about in the dark, but thought they could do something for the look of the eye. We also saw a plastic surgeon, he suggested wiring his bad eye to his good eye through his nose so that the eyelids could perhaps move together. It was all maybe this would work or maybe that would help, so we said NO. If they had been in a position to give me guarantees that they could help Sam I might have gone on further, but there was no difference in his eye from the time they started until we put a halt to it. These times were just so awful I don't know how we coped.

At the time we lived in Aberdeen and every time we took Sam into town in his pushchair he was stared at. People used to turn round even to stare at him. People can be so cruel. Once when Sam has just had another operation one ignorant woman said in a loud whisper "look what they've done to that child". I nearly hit her. It was at this stage we decided to move to a village, in order that the people would get to know Sam, and especially the children before he went to school. As there were no more operations Sam developed quickly although he remained a very quiet and shy boy.

When Sam was eight he took an infection and was very ill. It started very slowly, just a sore eye he said. We always had eye cream for minor irritations so used this. Just around Christmas he became very ill. This time we consulted another local doctor who did some tests and said Sam had an infection which usually affected the throat but it had attacked his weak spot - his eye. During this time Sam's eye had become enlarged, very red and swollen. Previously the eye did appear to be too big for the socket and did protrude but it was normal skin coloured. When the doctor treated him with strong antibiotics he became well again, we noticed a big difference in the size of his eye, it had shrunk and appeared a normal size. It was quite incredible. We have no explanation but it looks so much better not bulbous. In fact it looked as though he had just shut his eye.

When Sam was due to go into Secondary school, we decided to move to the west coast of Scotland. This was a difficult decision, bearing in mind Sam would have to meet a whole new range of people again, but he was keen to move to Skye so here we are. It is by far the best thing we have ever done so far as Sam is concerned. The school have been tremendous. They had a staff meeting before Sam started school and everyone was to look out for him and make sure he was not bullied. He has done well at school, far better than if we had stayed on the east coast. He has passed his driving test and his confidence is beyond belief. He was asked to do a dish washing job in the local restaurant when he was 14. He did that all the holidays, and then when he was 16 the chef left and Sam was asked to take over. He's done this for the past 2 years and now can cope with a hundred meals a night.

He has a great personality (I know I am biased) but I think nature compensates sometimes and he is very popular with the girls. I know he is a bit apprehensive about leaving home to go to University. He will obviously come across ignorant people again who will stare, but I'm sure he will cope.

Sam plays football, golf etc. So far his eye has not stopped him doing anything he puts his mind to. So stick in there parents, it's amazing what your children can do given lots of love and encouragement. Sam is so special to us it's difficult to put into words. We love him to bits.

On March 14th of this year I gave birth to my second baby, Matthew. On being handed him my husband Mike went straight to the window and held his face to the sun. As Matthew blinked and closed his eyes to shut away the light Mike let out a deep sigh of relief at the realization that Matthew could see.

Three and a half years earlier we had been through the same scene but our first baby Susie-Jo hadn't blinked and reacted to the light. She hadn't even opened her eyes, because, as we were soon to be told, she didn't have any. The horror of those few moments when I realised Susie-Jo was blind imprinted in my memory and will never be erased. The guilt that I feel at the thoughts that were running through my mind as I still lay on the delivery table still troubles me but the pain has faded with time.

Despite the assurance from a geneticist that it was highly unlikely that there would be a reoccurrence of anophthalmia in a future pregnancy the seed of anxiety had been sown. My only experience of pregnancy and childbirth was Susie-Jo and a miscarriage, therefore, my personal experiences had become normality for me and the possibility of having a healthy sighted baby was odds against. Secondly, having entered the world of disability because of Susie-Jo I had become the victim of a little bit of knowledge being a dangerous thing.

Because of the past miscarriage, early bleeding and the realisation that termination could never be an option for us, Mike and I decided to have no investigative ante natal tests on Matthew. We were cared for by a very supportive team of G.P., midwives and consultant who respected and understood my anxieties and concerns and did not add to them with suggestions of paranoia. I will always be grateful to them for the professional and compassionate way they dealt with my worries because one of the strongest feelings I was dealing with at that time were feelings of inadequacy and to have my confidence further eroded would have made the situation worse for everyone involved.

When I was 20 weeks pregnant my consultant gave me a very detailed scan and was able to inform us that the baby's eyes were present and normal size. Although this was hugely reassuring I was unable to fully believe it until I actually saw Matthew's eyes myself and it has taken a further 3 months from birth to be fully convinced he can see properly.

Like a number of anophthalmic children Susie-Jo has additional disabilities and her development is very slow. We haven't reached many milestones yet such as walking and conversing. However, she is a very beautiful, loving and happy little girl and a strong character is starting to emerge.

The day I had Susie-Jo I remember wishing I were still pregnant. I wanted my bump back and to still be safe in the embrace of ignorance. I felt cheated, as if I was leaving hospital with just half the promised baby. However, very soon I was experiencing the same pride and joy in my baby as any other parent.

I am so happy she now has a sighted brother to grow up with. There were many times when I thought we would never see a positive result and sometimes the worry of the pregnancy made me wonder if it was all worth it. I am now having to adjust to the realisation of having a sighted baby and stop the constant narratives and encouragement to "touch". Seeing his eyes sometimes fills me with sadness for what Susie-Jo might have been.

Three and a half years on I would give her my eyes if I could, but I would never be without her. To me she is as whole and complete as the next child.

This next letter was written by Debby from Southend

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Debby wrote to "Let's Face It". A newsletter for the Facially Disfigured about her elder son's experience at school regarding Adam.

Our youngest son Adam was born in November 1995 and has a microphthalmic left eye, which means the eye stopped growing when I was 6/8 weeks pregnant. Venturing out when he was a baby wasn't too bad then because when he was asleep people couldn't notice his eye, but as he got older and slept less we started getting more and more stares and comments.

At first his eye was just smaller with a milky, misshapen pupil but as he grew the eye rolled up into his head leaving him with a totally white eye. On Sunday, June 16th he woke up with a red swelling in the eye and after much tooing and froing back to London hospitals we were eventually told that he had a cyst growing behind the eye which needed to be left for a time to allow a bigger eye socket.

And now the looks and stares really started. I would never have believed if I was told just how rude and ignorant some people could be.

Adam at 20 months is too young to realise, yet, what people say and how people turn away from him. Daniel, our eldest son, who is 6 isn't. He seemed to be coping until recently.

They were talking at school about babies and the things they couldn't do. One of Daniel's friends, proud to know someone different, said that he knew a baby who had a "red eye". Of course most of the children went "URGH" and Daniel became very upset and started to cry. The teacher instead of allowing this to open a conversation about differences told Dan that they were only talking about his brother because he was "sweet". This happened on a Monday morning but Dan didn't tell us until the following Sunday evening. He had acted strangely that week but I couldn't get him to tell me what was wrong. Suddenly, thank goodness, it all came rushing out before bedtime.

The next morning he overheard the end of a telephone conversation that I had telling his Nan what had happened. This reopened the subject and I couldn't believe the enormity of the rage, the frustration, the amount of tears and the pain that came from such a little boy. I telephoned Christine then because I felt totally out of my depth. He was expressing some of the very thoughts and emotions that I had but he was only 6 and I felt so angry that other people had made my son feel so badly about his baby brother. I so want him to feel proud of Adam and not embarrassed or ashamed of him.

I telephoned his teacher and explained just how upset Dan had been and I said that I really thought that the best thing would be if I could take Adam in and explain that just because Adam looked different he was the same inside and also how sad and angry Dan felt when they said things about his brother.

It was the best thing for Daniel that I could ever have done, and I really wished I had done it sooner. He stood at the front of the class with me and showed his friends the photos of Adam and how his face had changed over the months. The interest that they showed and the questions that they asked totally amazed me. To see Dan standing so proudly with his arm around his brother is something I will never forget. It was worth all my nervousness and the couple of sleepless nights I had had before.

Christine (Founder/Director of Let's Face It) wrote a letter to Daniel saying that he was a hero for being such a caring big brother but the next day I truly felt like one too. A couple of the Mums came up to me and thanked me for making their children realise how important the words that they use are. When the school door opened some of the children came running over proudly clutching drawings that they had sat and done for Adam in their own free time. I was totally amazed. I only wished I had plucked up the courage before.

So if your children are hurting because of the comments they receive I really would say that the best thing, however scary it seems, is to confront it head on. Go and tell them exactly how it feels to be on the receiving end of it. By keeping quiet nobody realises how hurtful their words can be.

My son Dan is the proof and I will have no hesitation in doing the same thing when Adam starts school.

"Let's Face It" now has a new address:
14 Fallowfield, Yateley, Hants, England. GU46 6LW.
Tel: 01252 879630 or Fax: 01252 872633

Even though I was groggy I can still hear those words. They will be there for the rest of my life. I can remember saying to her ‘don’t be stupid, how can a baby be born without eyes?’ That night I eventually cried myself to sleep and thought it was all a bad dream and in the morning I would wake up and everything would be all right. I woke the next morning still a little tired and lay there for a few minutes. I suddenly sat bolt upright and looked at my baby’s eyes. It wasn’t a nightmare – it was true.

As our children’s eye conditions are rare and hardly ever seen, the staff at the hospital put me in a room on my own and didn’t know how to deal with me. After two days and having been seen by numerous doctors etc, we were to go. I went home with Chris and James (my eldest son) in complete shock and was left to deal with this blind baby. He was perfect in every other way. He had eyelashes and cried salty tears like his brother.

The first two years of Andrew’s life were spent in many hospitals, clinics and waiting rooms. We saw every specialist there was, had every test done. The final day came when we would get the result of all Andrew’s tests. At last we would finally know. They couldn’t give us any answers. They had none. It was an "Act of God", a "quirk of nature" was our answer. We asked if they knew of any other children like Andrew and were told ‘No’. We continued to struggle and had no one to talk to who had been through the experience. I spoke to other Mums who had blind children, but it wasn’t the same – the children all had eyes.

Andrew is now 14 and still as lovable as the day he was born. He has a wonderful sense of humour and the room lights up when he walks in. He now attends a school for the blind and is benefiting from this experience. I am very proud to be his Mum. Andrew has a younger brother Michael who is now 11 years old, like his older brother James, his sight is OK.

After 6 years a newspaper article was printed regarding an environmental issue that could cause babies to be born with these conditions. At the end of the article they asked for any families who had children born with these eye defects to contact them. At last I thought there are others. That sounds awful, but to think that there was somebody we could talk to, somebody who would understand. The meeting was set and around 20 families turned up. We were all stunned; we all thought that we were the only ones. At the end of the meeting it was decided that there was a need for a support group. This was how MACS started.

First off, we needed some sort of Committee. I ended up being Secretary. I had done this sort of work before having my children, so I could remember the basics. Then there was a name that had to be found. Many, many ideas later, the balloons became our logo.

We became the Micro and Anophthalmic Childrens Society in May 1993. We now needed to become a Registered Charity before we could raise any money for the new group. I rang up the Charity Commissioners and asked them for the appropriate forms. They arrived. They weren’t forms – they were a "thick book"!! There were only three of us on the Committee at this stage so we had to meet. We all lived over an hour away from each other. We sat down and wrote our constitutions (rules) and this was no mean task and then fill out all the answers. This then had to be typed up. The "thick book" was for guidance and help only. It took me all day to type this up and send it off to the Charity Commissions for registration. At last I thought we have done it. Many phone calls later and alterations in our typed copy of rules we were granted Registration. Euphoria!! Now we can really get down to business.

In July 1994 we had the launch of MACS at Battersea Park in London. We sold balloons so that they would be released into the air all at once and became our symbol. This was very spectacular as they represented the children and their families. This was also to be our first meeting.

Some 20 families and their friends were there to help celebrate with us. Many exchanged addresses and telephone numbers and have become friends. It showed us that day there was a definite need for MACS. Families wanted to talk about their experiences, they wanted to tell their problems and how they got round them, they wanted to share, they wanted to belong somewhere and we were providing that.

MACS produced a leaflet about the aims of the group, explained what the conditions were and had contact numbers where we could be reached. We gave them to families who very kindly put them in hospitals, clinics and anywhere they thought families would see them. During this time I had written to Anne Diamond and asked her if she would consider becoming our Patron. She very kindly agreed as she understood what we were about as she had been campaigning for Cot Deaths herself. Almost 8 years from that first meeting MACS has become well known amongst the medical profession including health and social workers. We regularly send out a newsletter three times a year so that families can be aware of up to date information, day courses for the parents of visually impaired, respite care, holidays for the VI, help and advice on benefits that the children can receive. We encourage the families to write and use the newsletter if they want help or advice. Some have told us of their struggle and how they overcame it and children write poems.

MACS needs to raise funds for its AGM/Weekend. We do this at various locations and subsidise the families as much as possible so that every family that wants to come along from Friday to Monday can. These weekends have been very beneficial and we have had a speaker at each of the 7 AGM’s that we have arranged. We firstly had a very talented and successful 40+ year old man who has bilateral anophthalmia. He gave us a talk about his time growing up and to present day. He gave the families positive thoughts at what the future could hold. We have also had professionals who have proved as worthwhile in their own right. We have many families who continually raise money towards MACS and are very enthusiastic. We now have voluntary subscriptions that raises a few pounds. From head shaving, marathons, ½ marathons, car boot sales, coffee mornings, raffles etc., you name it and one of the families will have done it. Without them MACS would not be able to run efficiently as it does today. We are a very successful group. We still have our balloon release which is now held on our weekend. Families make salt dough; we sell MACS pens, T-Shirts, sweat shirts, key rings and lapel badges. Some companies donate their time and equipment for use on these days.

Each of the Committee members in their own right works very hard and endlessly for the group. I myself spend up to 5 days a week writing welcoming letters to new families, filling out data base forms for health authorities, organizing committee meetings (we try and meet every 6-8 weeks) and answering the phone and e-mails. MACS now has a mailing list of 400+ families and 60 professionals that we send newsletters and any other information to. Many of the families are in the UK, but we have 100+ families in Europe and abroad.

Postscript: Maggie stood down from the role of MACS Secretary in May 2005. Both Maggie and her husband Chris remain in contact with the current Trustees and we are of course able to forward any messages to them. (Please email Lynda@macs.org.uk )

This Letter is from Sacha Eikenboom in the Netherlands whose daughter has anophthalmia

With our daughter being only 1 year old, I still remember that terrible moment very well. Our baby seemed perfectly all right, except for her right eye: the eyelids were closed and a bit swollen. The doctors thought this was due to the last heavy part of the delivery and I, tired, excited and assured that my baby was all right at first sight, didn't pay much attention to it. I had a beautiful daughter, would conquer the world with her and was ready for all the congratulations, presents and admiring looks!

The next day our world turned upside down. The doctor told us that a scan was necessary to further examine little Ellis' eye. He also spoke about a problem with the eye, which he couldn't figure out very well without a scan. Words as 'visually impaired' and 'maybe not a good sight' were spoken. The doctors nervous attitude raised my suspicion: what exactly was he thinking about? Could my daughter see with her right eye? Suddenly a terrible thought crossed my mind and I asked the (in my view) hysterical question: was it possible that my daughter didn't have a right eye? From the doctor's avoiding answers I instinctively knew. Not being able to answer our questions or restoring our hope the doctor left us. We still were very happy with our new born girl, but black clouds came drifting in.

The impossible, unexpected never ever thought of fear became true the next few days. Our daughter had unilateral anophthalmia! Coming from two healthy parents with no health problems whatsoever in our families this message was unbelievable. Of course every expecting mother sometimes thinks of the chance of getting a child with a handicap, but living healthy and going through a perfect pregnancy. I waived those discouraging thoughts away, and now they had become real ... Being a perfectionist I really thought I'd failed. I didn't want to see anybody, felt a loser to my husband, family and friends and most of all: I felt a lot of self pity.

Of course family and friends told me things could have been worse. Ellis' left eye seemed (and is, as turned out) all right, and lots of people function perfectly with only one eye. She has a beautiful face, no other health problems occurred and 'the doctors can do so much these days'... Comforting words no doubt, but wasted on me at the time. I hated them for their optimism and thought otherwise: what should become of our daughter? What sort of a life did she have to expect, with one eye, being deformed in her face? I didn't want this baby, wasn't she (or I?!) better off dead ?!

Those dreadful thoughts kept crossing my mind, and at the same time: for all those thoughts I felt ashamed, those weren't thoughts a mother was supposed to have. I simply wanted to wake up from a bad dream, with a beautiful, two eyed baby smiling in my arms.

After almost a year it's hard to imagine I really had those thoughts. Our first months with Ellis were months of desperation, fear, anger and most of all: uncertainty and ignorance. The specialist in the nearby eye-hospital told us this problem was very rare, he immediately called his colleague in Amsterdam to take counsel together. Now I know we're in the best of hands, but how could I know then? We entered a world we'd never known: a world of eye prosthesis, operation prospects and child-physiotherapy. Nobody could give me any satisfying information about our prospects, and my appeal in a national magazine led to only two letters from parents with children with bilateral eye problems. But, with all due respect, these people had problems of a different kind. Who could tell me about the history of anophthalmia, the medical treatment, experiences and prognosis? Maybe even more important: how did other people cope with this problem? At last a friend tried Internet and that's what started my change of attitude.

Through Internet I became aware of ICAN (in the USA) and MACS (in the United Kingdom). We weren't alone in this! What a relief to know other people had the same problem. How comforting to read in the newsletter the story of a man with only one eye, succeeding in life, being happily married with two children. His ironic but realistic story confirmed what my husband had told me all these months: our daughter will be as pitiful as we make her. Writing to other parents gave me hope, and maybe even more important, made me aware of the fact that other, children are worse off. After 10 months I could see things the other way round. At first I would only jealously look at children with two eyes. Now I began to realise we may be even blessed with Ellis' beautiful (and functioning!) one eye.

Someone once told me I had to go through the process of mourning: over the loss of the baby I dreamt about but never had. I guess that's true in a way. I indeed cried a lot of tears and still do. Especially when I'm not in a very confident mood or when I read about sad children's stories. But I have also grown strong, having dug up all the information I can get (thank you so much MACS and ICAN and writing parents! ). Now I know we're on the right 'medical treatment' path and that's an assuring idea. How much I've grown became obvious when I recently spoke to a crying woman with a baby (nine weeks old) with also unilateral anophthalmia. Immediately I recognised her fears and grief, and told her our story. How good it felt to be able to help her in a way. Ellis is doing so fine, smiling a lot, not being bothered at all by her missing eye. Her prosthesis is already so much larger than her first little shell, so we dare to hope for the best.

What the future has in store for us? Ellis recently had a scan, and she will probably have an eyelid operation very soon. But how many hospital visits will follow and how many tears I'll be crying: Ellis' anophthalmia has settled itself into my life, I don't fight it any longer but see it as one of Ellis' strong characteristics. Ellis herself gives us strength, and some of it I hopefully passed on to that crying mother.

Why this long story? To express my feelings perhaps, for me writing is a way of processing. But also to create recognition and maybe pass on a little hope to other desperate parents who just found out about their child's eye-problem. Your kid really is as pitiful as you make it. Who would have thought those words would have ever come from me? I certainly not, but they do. Right from the heart.

As a parent of a Microphthalmic child I would like to encourage other parents to take heart. When our son was born on 15 February 1984 the days that followed were very painful, for me and especially my wife, apart from our parents we were alone.

We were without help or someone to discuss things with, or anything to help come to terms with our sons problem. MACS would have been a great help to us at that time. (We have only been a member for three years) . Gradually we all came to terms with our sons difficulties and rejoiced that he has no other problems. We all decided to lead a normal life as a family unit.

Our recluse type lifestyle began to subside. My wife no longer rocked the pram until the child was asleep prior to visiting the shops so she would not face the "What's wrong with the babies eye questions". Then playschool started, this generally helped all concerned apart from a small pocket of ignorant children who made our lives hell.

You can only protect so much and our son had to find a way of dealing with this in life, happily now he deals with peoples reaction to him very well and quickly wins people over with his warm personality and quiet manner. His only difficulty is an understandable slight lack of confidence.

There have been a few times that I have had to console him. One of his problems as with most of us he had great difficulty in the eye, hand, and foot co-ordination required for most ball games. However as he changed to a new school they asked him to play Rugby, I thought fine this may help him with co-ordination. He spent a year in occasional 2nd XV matches and I thought it nice of the school to try and include him and boost his confidence. I was delighted to learn that he had been selected for the lst XV this year.

I went to see him play and although he had a way to go he was OK and definitely a team player. This season has seen him progress into a team as yet unbeaten in the local area competitions. You can imagine how pleasantly surprised I was when he came home to announce that he was invited to trial for the WOSPS (Basically all the schools north of the Tay and Clyde Valley). Although very happy we were not really surprised when he indicated he was one of four reserves picked to play against the DANDYLIONS (from the TAY and Clyde Valley south of the Scottish Border).

We all arrived on the day at the Rugby field to watch an excellent first half, our son on the touchline. I reflected what an achievement to have really done so well against all the problems and difficulties. As the game progressed they called for the team trainer to attend to an injury, you could have knocked me over with a feather when yes, our son was told to limber up. Much to my surprise he made an immediate difference to the scrums and line out. The game was finally won by the DANDYLIONS 15/12 a good close game. At the end I heard that the Scottish Schoolboy team was to be chosen from the boys who played that day.

It is impossible for me to express in words my feelings when he arrived smiling faced to say he had been selected for the Scottish team. It was all I could do to hold back the tears of joy that even now run down my face as I write this letter.

For me my son has completed with not his peers but with his equals. He has shown that all is not lost that our children all have a part to play, and in doing so they enhance themselves and perk up their parents.

On August 3, 1996 my life changed forever. At 4:16 p.m. I gave birth to my third child, Karlie Susanne Rye (Karlie Sue). Immediately after her birth the room became quiet. Although nobody said a word, I knew something was wrong by the look on my husband's face. Across the room, I could see my beautiful baby girl and to my shock saw three large growths on her left cheek. Every parent's worst nightmare had just happened to me.

In the beginning my pregnancy was far from being perfect. On January 16, 1996, I went for my first doctor's visit only to hear, "The ultrasound shows no baby, yet the pregnancy test is positive". After two hours of probing, the doctor finally revealed the tiny fetus by way of vaginal ultrasound. I was told the baby was lying against my back and therefore could not be easily seen. This explained the gruesome back pain I had been experiencing at only a few weeks into my pregnancy.

The next few months went fine, I did everything I was supposed to, including exercise and watching my diet. I was a picture perfect expecting mother, under enormous amounts of stress trying to work full-time as a paralegal and also manage the everyday life of mothering my other two children, who at the time were three and one.

On June 26th, I went for a routine doctor's visit. I mentioned to my doctor I had been having some fluid leakage and minor cramping. After examination, I was shocked to learn that not only was I having pre-term labor, I had already dilated to 3 centimeters. I was given Tributlin, a drug to stop early labor, and was placed on 100% bed rest. Afte r the first dose of the Tributlin, I decided it was not for me. I could not stand my heart feeling like it was going to jump out of my body, so I decided I would stop my early labor naturally with no drugs, only rest and relaxation. This was a great effort , as my time was spent tending to the needs of my other two children.

During the next six weeks, I was in and out of the hospital for pre-labor symptoms and at one point, I even walked out against physician's advice. I absolutely refused to take the Tributline shots. Throughout this period, I developed a sense that something was not right. Though I had mentioned again and again I thought my bag of waters was leaking, it never showed until the day I went into labor.

At 2:00 p.m. on August 3, 1996, I once again arrived at the hospital for labor symptoms. Even though little Karlie Sue was not due for more than three weeks, I finally got the green light. It was safe to have the baby! I opted for an all natural birth that lasted a little over two hours and at 4:14 p.m. the big moment came, I was ready to push. To everyone's surprise, including my own, with one small push, Karlie was born into the arms of the nurse. (The doctor was sitting down doing the routine paperwork, etc). Even though Karlie was placed on my stomach immediately, I was oblivious to her condition.

My mother, whom I love dearly, was the first to say something about Karlie's condition. "There is something wrong with Karlie, she has a few growths on her face". At that moment, I demanded to see my daughter. As they brought her over, tears filled my eyes and again the room fell silent. When I said her name she looked towards me, and it was then that the growths disappeared. Although she was not the perfect child I had imagined, she was absolutely beautiful and every bit as sweet.

A few hours later an unfamiliar doctor came into the room and asked everyone but family to leave. My heart fell out of my chest, and his words would change my life forever. "I am sorry to tell you that your daughter was born without her left eye. There is a cyst in its place and upon x-ray examination it shows there is no viable eye. Her heart appears to be enlarged and on the wrong side of her body and all of her other major organs appear to be on the wrong side of her body. It is completely normal, when a child is born with one severe abnormality to have others". At this point, the growths on Karlie's face and her missing eye became unimportant. We knew this was cosmetic and could be fixed. We were more concerned about her heart and other organs, and knew this could mean life or death. The news traveled fast to family members, and the bedside phone began to ring with calls of comfort and support. My mother told me she had been in touch with my Uncle John, a Minister in Oregon. He asked his entire congregation to pray for Karlie and our family the next day.

On Sunday, August 4th Karlie was taken to Loma Linda University and admitted to the NICU. As the ambulance drove off with Karlie in an incubator, my husband and I left in the car with an empty car seat and no baby. We drove behind the ambulance, crying every mile of the way. The NICU wasted no time in their procedures. An echocardiogram and ultrasound were done immediately, however the results would not be known until the next morning. We never left Karlie's bedside. Both my husband and I did not want anyone else there for her when she awoke for feedings. The first night in the NICU seemed to last forever.

A Tiny Miracle
On Monday, August 5th, a miracle took place. A pediatrician came in the room and informed me there had been a big mistake. The x-ray technician had marked the left and right side of Karlie's x-ray wrong, and thus, the radiologist read it backwards. This explained why all of her internal organs appeared on the wrong side of the body and her heart enlarged. Words cannot explain the joy we felt in our hearts. The doctors can call it a medical mix-up or whatever they like, but I know it had something to do with a power greater than medicine.

On August 15, 1996, less than two weeks after her birth, Karlie had her first surgery. Doctors at Loma Linda Medical Center removed the growths or "skin tags" on her face as best they could. Soon after I met with the genesist, who confirmed Karlie's chromosomes were perfect. There were no findings to indicate this was a genetic disorder and therefore would not effect future pregnancies. It was then I was given the diagnosis "Amniotic Band Syndrome". An extremely rare condition normally effecting the limbs of the fetus. Very little is known about Amniotic Band Syndrome, or its cause. It is known, however that the odds of Karlie surviving early Amniotic Banding are one out of six million.

Refusing to believe my daughter was born with a condition that even the finest doctors had never heard of, I began a research campaign on Amniotic Bands, the cause, and their effect on the unborn fetus. Amniotic Bands are best described as follows: Imagine laying a "string" across a developing fetus. As the fetus grows, the "string" (Amniotic Band) prevents the fusing together of parts of the body it is in contact with. The "string" can also wrap around organs, stopping the flow of oxygen, thus stumping a limb or organ. We all know the fetus develops in stages, so the "string" occurring at week five would obviously cause a different birth defect then the "string" occurring during week fifteen of pregnancy. The defects can range from anencephaly, facial distortion, unusual facial clefting, eye defects, cleft palate , ear deformation, amputation of limbs, foot deformation (Club Foot), and/or dislocation of the hip. A fetus who suffers an early Amniotic Band encounter, such as Karlie, has less of a chance of survival than a fetus suffering bands later in the pregnancy. (4th Edition of Smiths Recognizable Patterns of Human Malformation).

In the beginning I was mad at everyone, especially my doctor who I felt should have known something was wrong. After all, I did everything I was supposed to, and had all the warning signs of a serious problem. Then, for some unknown reason, I began to blame myself. Did I do something different this pregnancy, did I eat too much or too little of something, did I miss my vitamin on a certain day? Was I exposed to too much radiation at the dentist? All questions of which nobody could answer.

A Twist of Fate
By early December 1996, my husband and I were worn out from all of the chaos that had overtaken our lives. One afternoon, while reading an article in the December 1996 issue of Woman's Day Magazine, I came across a story about a child who was born with facial differences. At the end of the article entitled "An Answered Prayer", the name "Operation Smile" appeared. As a last resort, I contacted Operation Smile. Little did I know this organization would change Karlie's future. Soon after I submitted the application, an appointment was made with Dr. Ralph Wesley of Nashville, Tennessee and I was thrilled to learn Karlie had been selected for reconstructive surgery through Operation Smile.

Begun in 1995, Operation Smile is a non-profit organization, in which hundreds of volunteers work year round providing surgeries to children and adults with physical anomalies. Operation Smile is an all out effort by generous doctors, anesthesiologis ts, nurses and support staff, all of whom graciously donate their time and talent to children and young adults throughout the United States, who desperately need facial reconstruction.

In June 1997, less than one year after her birth, Karlie was scheduled to have her second major operation, whereby Dr. Ralph Wesley and Dr. Joe Delozier would reconstruct the left side of Karlie's nose and eye. After three hours of surgery and nearly one hundred tiny stitches, the doctors successfully removed the Amniotic Band that ran from the corner of her eye down the side of her nose.

Operation Smile graciously took Karlie under their wings, making sure Karlie received the medical treatment she needed. Since that time, she has had three more surgeries and recently she received her first prosthetic eye from Scott Fiscus. As I looked at my daughter for the first time with not one, but two beautiful green eyes, words cannot explain my emotions or the gratefulness felt towards Operation Smile and Woman's Day Magazine. This was the first time since her birth that Karlie was able to face the world without her eye patch.

In the end, I remember back to that moment when our lives changed forever. Karlie has brought much love into our lives. She has opened our eyes to how precious and delicate life can be. As Karlie continues to grow into a beautiful little girl, Operation Smile continues to fill our lives with endless possibilities. Operation Smile has given our family hope by providing Karlie with the medical treatment she may no t otherwise have received. We are grateful to each and every doctor and volunteer of Operation Smile who has taught our family that while we may live in a world filled with chaos, there still exist people who really do care.

The following story is from Shari Willis. She turned a tragedy into hope for many children.

Three and a half years ago while standing at a Washburn Law School pay phone, hearing that the baby I was carrying had a never-before-reported chromosomal abnormality, I never anticipated the good that could come from my family's tragedy.

Tears streamed down my face as my obstetrician told me that he had no idea what would be wrong with the baby. "But," he said, "these things generally are not good."

On June 19, 1995, following a physically and emotionally difficult pregnancy, I delivered a beautiful little girl. My husband, Jeff, and I named her Katlyn. Though Katlyn, nine weeks premature, was born deaf-blind (with microphthalmia), Jeff and I never felt burdened or cheated. She was alive - we were blessed. So we, along with our oldest daughter, Jordan, bundled up tiny Katlyn and headed into the unknown world of raising a child with a disability.

We quickly learned that the difficulty of finding appropriate educational resources for a deaf-blind child was compounded by the near impossibility of funding them once they were located. Hearing aids cost $2000; a light box with coloured transparencies cost $1000; custom fit "conformers" used to help Katlyn open her eyes were $300 each - and they had to be replaced every two weeks. Despite the overwhelming expenses we faced, my family managed. As soon as Katlyn was released from the hospital, we began making biweekly trips to Tulsa, Oklahoma to visit Katlyn's oculist. Similar trips to St. Louis resulted in the purchase of hearing aids for Katlyn before she was two months old. But it was Katlyn who really worked! She started tracking lighted objects, reaching for them with her hands. She quickly learned to roll over, and slowly started trying to crawl. She even learned to sign "Milk" when she was hungry. Katlyn was proving wrong those who doubted her capabilities.

Just when Katlyn began to show that she was not only planning to live, but also to thrive, she contracted the respiratory virus RSV. Her prognosis was poor. Katlyn was hospitalised for two months struggling with the illness. My family, too, was struggling . . . How could God take Katlyn from us just when she was proving how much she loved life? During Katlyn's hospital stay, a nurse told Jeff and me that we needed to listen to Katlyn. "She will tell you when she is ready." "How," I thought, "can a baby ever be ready to die? And, how can a mother ever prepare to let her child go?"

We took our little angel home praying the doctors were wrong. Despite her obvious discomfort, Katlyn remained brave. Though she laboured for every breath, Katlyn never cried or fussed. She just snuggled with us in a way just not possible at the hospital.

That evening, Katlyn's breathing eased. At first we thought it was a sign of improvement. It was not. Katlyn had made a decision. She was ready. And I had to respect her wishes, although to do so broke my heart.

While, stroking her velvety cheek, I promised my little Katlyn that I would continue to fight for deaf- blind children. I told her that her suffering would not be in vain . . . Her life would make a difference. Katlyn gently slipped away while resting in my arms. I will always remember her as the strongest, bravest, and most giving person I have ever known. She gave so much and asked for so little.

On June 29, 1996, my family celebrated Katlyn's first birthday by presenting two educational scholarships to deaf-blind children from New York and Minnesota. We did so on behalf of Katlyn's Hope, Inc., a newly formed non-profit organisation established in Katlyn's memory. Since then Katlyn's Hope has hosted many fund-raisers, and has presented thirteen separate awards to children from across the country.

The scholarships are used by the children and their families to fund educational resources they could not otherwise afford. They are available to children anywhere in the world. Monies have been used to purchase things like computer software, educational toys, Braille books, intervener training, and interpreting services. Even more important to the families, however, is the support and, of course, hope that we give. These intangible gifts are truly priceless.

Now, nearly three years since Katlyn's death, I am proud to have kept my promise to her.

Katlyn's life has made a real difference in the lives of others. While a day does not pass that I don't wish that Katlyn were still here in my arms, I feel truly blessed to have been given the opportunity to know her at all. She was a special gift from God not only to my family, but also to the families of many others touched by deaf-blindness. By sharing Katlyn's love with others through Katlyn's Hope, her endearing spirit lives on.

Shari R. L. Willis, president of Katlyn's Hope and author of this article, is an associate attorney at McDonald, Tinker, Skaer, Quinn & Herrington, P.A. If you would like more information about Katlyn's Hope, Inc., you can phone her at (316) 326-6118; write her at 303 South Elm Street, Wellington, KS 67152 USA; or E-mail her at khope@idir.net or contact us at MACS.