Jayne

©Carol Armstrong circa 1988

 

Jayne’s First Five Years

1979-1984

 

The Golden Box   

I believe that in everyone’s life, heartbreaking events lead to the healing of others. 

For me, my most heartbreaking event was the birth of my first child, Jayne. She was so much wanted; I loved her from the day she was conceived. From that day to morning sickness to anticipating and waiting for her birth, I remember being anxious wondering if my child would be healthy. I remember the labour, the excitement, the pain, counting contractions—and I remember her birth….I remember the bubble being burst, the loss, and the grief. 

After only a four hour labour, my baby was placed into my arms, and she was beautiful. I was overcome with emotion. She weighed 6 lbs. 8 oz. and was 18 inches long. It was the 6^th September 1979, 2:18 a.m. 

It was some time before the words that were said by the gynecologist sunk in: 

“Your baby has 10 fingers.” 

“So what? Who cares, don’t all babies have 10 fingers?” I thought.  

The words, “They can be removed surgically” hit me. What is he talking about? 

As I held my baby I saw them, one by one on her left hand: a little stump that jetted out from the side with two little nails; on the right hand a curved extra finger, looking so perfect. 

The diagnosis was unclear. Arrangements were made to see a pediatrician whilst in the hospital. Dr. Macdessi came to see us and examined Jayne the next day. He was very gentle with his approach in giving us a diagnosis. He said he had seen photos of a baby like Jayne. The limbs were short and he knew it was a very rare dwarfism. However, he was not sure what the syndrome was called. I remember the doctor asking us if my husband and I were related in any way. I think one of us mumbled, “Only by marriage.”

I felt as though a sledge hammer had hit me on the head. I kept asking why us? I wasn’t a bad person. Warren wasn’t a bad person. I tried to think of all the horrible things I had done so I could justify why my child, who was completely innocent, had to be born this way. I blamed myself. I asked myself what if I had done this and not done that…I had guilt trips. Everything I experienced, every feeling I felt was normal at the time, and I somehow got through it. It took time. 

All alone in the hospital, I cried that night for my baby. At home, Warren cried, too—not for the baby, for me. If it wasn’t for one exceptional nurse who sat with me most of the night, I don’t think I would have made it. She was a very religious person who kept trying to convince me that there was a reason we were “blessed with Jayne.” God was furthest from my mind. How could there be a God? Why would God do this to us, to a baby? I remained friends with this nurse after we left the hospital.  

At this time Warren and I were not aware of Jayne’s complete diagnosis. It’s strange that I felt no support when leaving the hospital; I had the feeling that the staff didn’t know what to say to me. They seemed to avoid me. Maybe it was my imagination at the time, but even as I look back now I still feel the same way about it.  

I remember a baby girl, born the same day as Jayne, who was being put up for adoption. The mother wasn’t young; her partner simply didn’t want the child. The mother chose her partner over the child. I found this very distressing. The nursing staff fussed over the baby dressing her up and constantly holding her. The mother was given a private room, and I was very bitter towards her. She had given birth to a perfect baby and didn’t want it.  

I was very disillusioned with my friends and work mates as well. All around us others were receiving congratulations, flowers, visitors; the works. I had given birth, too—yes, our baby had been born with some problems, but we deserved the same attention as everyone else. I couldn’t stand to see all those visitors coming and going, so I would pull the curtains around me. But still I could hear the whispers, the pity.  

Whilst in the hospital we had a visit from a young girl, about six-years-old, who was a twin. She had been born without any arms. The girl’s mother had taken Debondox during her pregnancy—and so did I. At the time there was a thought that Jayne’s problems had been caused by this, and they wanted me to document it, which I did. 

After seven days we brought our Jayne home. Even as I write this now I still cry; there was nothing or no one in this world who could mean as much to me at this time. I channeled all my love and time into her. We didn’t know how long we were to have Jayne—we knew nothing—so I was going give her every moment of my life to her. 

We had six weeks before we were to see the doctor about her diagnosis. I had a visit from a welfare agency to see how I was coping. They only stayed ten minutes and I never saw them again. However, I had a really good bonding with the local nurse from the baby health centre. She was great help to me with my depression and talked me through many issues. She would often get me to drop Jayne at the centre and she would mind her whilst I had time out for myself.  

Jayne was hard to feed; she had a partial hair lip and small gums. As a result, she could not latch onto my nipples, so I had to use a nipple ring. I had milk everywhere, and she was so slow that eventually I gave up and used bottles with expressed breast milk. I didn’t know many people who had young children or babies at the time because I had worked up until Jayne’s birth, so I was feeling quite lonely. My parents were living on the Central Coast and were both still working so I was virtually on my own. Warren’s mother lived at Harden and would come as often as possible to help me, and she was marvelous with Jayne, she loved her immensely.  

Jayne was only about six weeks old when we moved from Auburn to Merrylands. Luckily we hadn’t accumulated too many possessions so the move went relatively easy. Around the same time we had our first doctor’s appointment with John Macdessi, who we had met at the hospital. Fortunately Lorna (Warren’s mum) was visiting us. I remember this day like it was yesterday, another blow…  

Dr. Macdessi told us that Jayne had a hole in her heart. That was it for me; I would not have any more children. I was shattered …I couldn’t think…I was frozen…I was off the planet. I asked him when she was going to die. Would she see her first birthday? Would she go to school? I threw hundreds of questions at him. He couldn’t answer many of them and referred us to a geneticist at The Prince of Wales Hospital, Dr. Gillian Turner.  

For a few weeks we continued to accept our responsibilities as parents. Although, knowing about Jayne’s heart condition made Warren become obsessed with listening to Jayne breathe. He would touch her when she was sleeping just to see her move and put his head to her chest to feel movement. Yet, Jayne thrived; she grew, appeared to be healthy, started on solids, smiled, and reached all the milestones. We knew Jayne was bright, which was a huge relief.  

Finally, we had our appointment with Gillian Turner. She knew exactly what Jayne’s syndrome was as soon as she saw her. She presented us with a huge book, opened it to a page…and there before us was an exact picture of a baby like Jayne. She left us alone to read the findings regarding Ellis-van Creveld syndrome. All I could do was touch the picture and cry…finally, we were getting somewhere. The fingers were the same, the limbs and the gums. It was an old picture, taken in the fifties. It showed photos of adults, so I understood Jayne could live a long life and my fears of losing her early lessened. When Dr. Turner explained the auto recessive gene, I said I would not be having any more children. She took the opportunity to explain that with an ultrasound, they could measure the baby’s limb lengths in the womb, and she suggested I give some more thought to having more babies. We weren’t given much information because there wasn’t too much available. However, she did give us the name of a family (it happened to be the same surname as ours) that had a three-year-old child with EvC. 

It was one of the longest drives home. Warren and I didn’t talk. My head was pounding. I remember it was an extremely hot day and I wanted to throw up. I felt we had been hit with a sledge hammer again. I don’t know how we got through that day. I don’t know how we got through many days. We knew Jayne had operations ahead of her and we had to prepare ourselves for them. I felt I needed to talk to someone who had experienced it. So, finally when Jayne was around five months old we rang the Armstrong family from Engadine. The family was extremely excited to hear from us.  

I felt very nervous anticipating the visit. Neither Warren nor I knew what to expect. First Daniel, their five-year-old, walked in, followed by Kelly, their three-year-old that had EvC. Along with her were her parents, Jenny and John, and also baby Ben, who was three days younger than Jayne. Jenny was just as nervous as I was, and we compared our girls. Kelly had webbed fingers and toes as well as an extra toe on each foot. Jayne had fingernails whereas Kelly did not. These were only little things. We compared their heart, dental and bone deformities. Jayne appeared to be slightly better off than Kelly, who had more problems with her heart. Kelly had two holes like Jayne did, but Kelly also had valve trouble. Kelly and Jayne were both under the Prince of Wales Cardiac Clinic and saw the same doctors, which I believe was a great help to all concerned. We trekked our way to the clinic once a month for check ups. 

Jayne was scheduled for surgery when she was about two-years-old. However, it was brought forward when she went into cardiac failure, and was put onto medication. Her surgery was scheduled for November 11^th 1980 at Prince Henry Hospital.  

I met a lot of parents who were in the same situation as us. Some children only had the heart problems, but most had physical disabilities also. I had met one three-year-old little boy numerous times. He looked so old, yet his mother carried him; he could not walk because his heart was so weak. He died whilst we were there. The ward was devastated. Everyone felt the grief; we were all one big family, and we all felt his mother’s pain. 

I would not leave Jayne’s side except to eat and toilet. It was on one of these occasions that Jayne was taken for blood tests. When I returned and found Jayne missing I panicked until I was told where to find her. I could hear screaming and ran to assist her, only to find a young doctor yelling obscenely at her. He was taking blood from her neck; her veins were small and might have collapsed, so he chose to take it from her neck. I screamed and swore at him, and ordered him to take his hands off my baby. I picked Jayne up, cuddled her, and cried with her. I reported the doctor to staff, told them I did not want him anywhere near Jayne. I rang my pediatrician who also put in a complaint. The doctor was not seen on the ward again. 

Jayne’s surgery went ahead on the 11^th of November, and it was the longest day of our lives. Warren and I said our goodbyes to Jayne at the theatre. We sat on the beach at the hospital and did not talk. I prayed and I cried. Warren prayed. We headed back to the hospital after I really don’t know how long, and waited for the doctors. 

Seeing Jayne for the first time was heart wrenching. We had been instructed and given a tour of the ward, but you just can’t visualize it beforehand. Jayne was so little. She was naked on the bed with tubes everywhere, and I do mean everywhere. She had heaters to warm her little body; her skin felt cold and rough to touch. I felt helpless. I was her mummy and I couldn’t do a thing but hold her hand and talk to her, and wait for her to wake up.  

The operation was a success. They had repaired her heart using her own tissue, which had less chance of rejection. Jayne was sedated for two days. The next day when we saw Jayne she had been given the nickname the imposter because she had recovered so well. Jayne was sitting up playing with toys, oblivious to all going on around her. We were greeted with a huge smile. Needless to say, I cried.

 

After spending a further two weeks in the hospital we headed for home. 

This was not the last time Jayne would spend time in hospital. We had six months before the next round of surgery.

 

Along Came Bully Can 

So many things happened in the next two years. Jayne learnt to crawl, to walk, her personality developed, and she had more surgery.  

I spent so much time with Jayne. She was toilet trained before she even crawled. She could talk in sentences, sang songs along to the Patsy Biscoe record, and of course with me. I sat with Jayne most of the day reading stories and playing. I was a big kid to her. And I didn’t want to share her with anyone. I took her for walks every day. She would sing, “Here we go round the mulberry bush” and “three blind mice” as I walked her. 

Just after her heart surgery at fourteen months old—I think it was at the hospital; she started to crawl around on her bottom in a shuffle kind of movement, with her arms out to balance her. Her legs were very strong, and because her arms were short, she would topple over if she reached for anything. She learned to pick up objects with her feet and get them into her hands. She would think it funny that she learnt to clap with her feet. 

Because Jayne had recovered so well from her heart surgery and all the check ups had been excellent, I decided that I would have another baby. I was really apprehensive and anxious but had been to see Dr. Turner for counseling a few times. I really wanted more babies. I wanted six to begin with but knew that I could not have that many. I would be contented with one more. Also being in touch with Jenny Armstrong and knowing that two of her children were born without EvC urged me on. 

Jayne started walking at eighteen months and it was around this time I found out I was pregnant with Christopher. I was ecstatic about the pregnancy, but also found I didn’t want to get too excited. Before I decided to have another baby, Warren and I both discussed what we would do if the baby had EvC. It was a huge decision to make, but we had decided to terminate the pregnancy if there was any abnormality. As much as I loved Jayne and had accepted her disability, I did not want to bring another child into the world to suffer. I was perhaps being a bit selfish and thinking of myself and the pain that I had gone through, too. It was against all my principals to terminate a pregnancy, and I knew that if I had to make this decision I would have to live with it for the rest of my life.  

The first day Jayne walked was so exciting. She just stood up walked around the lounge, let go and walked to another chair and proudly announced “I walked this.” Jayne had a few falls, ending up with bruises on her head, so for awhile she preferred to crawl more than walk.

Jayne wasn’t a good sleeper. We had trouble getting her to bed at night and she would not sleep much during the day, as a result she would be overtired at night and throw tantrums. I didn’t get much rest during the days, either, and I suffered terrible morning sickness. Jayne would sit in bed with me playing, etc. By lunch time I would feel okay and managed to get things done. I had taken Debondox with Jayne’s pregnancy, but had decided I would not take anything this time.  

When Jayne was twenty-two months she had her extra fingers removed at the P.O.W. hospital. It was to be day surgery. We had to be there early in the morning, and if everything went okay we could come home that afternoon. We had explained, as much as you could to a twenty-two month old, that her silly little fingers were going to be taken off and she wouldn’t have them any more. The surgery was successful, but we almost didn’t come home that night; she had complications in recovery. It was very distressing. She was in a lot of pain and screaming. It was worse than her heart operation. We had difficulty holding her, but eventually after giving her more pain killers she settled down and we took her home.  

Jayne had her arms bandaged from her fingers to her elbows for two weeks, but it didn’t bother her, she coped and was happy. I didn’t take her out much whilst she was bandaged. I was afraid she would get knocked against. I met a friend one day for lunch and whilst we were eating I noticed a man staring at Jayne. He even followed us after we had finished lunch and I gave him daggers for a look. Still, he came over and asked me what happened to her—he wanted to know; did she pour boiling water over herself? I told him it was none of his business. 

The day came for the bandages to come off and we decided to go by train and bus to the hospital. We were really pleased with how her hands looked, although she had scars that were quite long. The doctor explained to us that her hands would be tender for some time, and that they would probably be stiff without full use for one to two weeks. Hmm…they don’t know me, I thought; I’ll have Jayne’s fingers working in no time. 

Warren nursed her all the way home on the bus and train. She was so funny; she kept sticking her hands out in front of her to look at them, and talked about her silly fingers being gone. The way I was going to get Jayne’s fingers moving was simple: I bought the biggest packet of smarties and tipped them into a bowl; Jayne loved smarties and I knew she wouldn’t be able to resist them. It worked. In went one hand, and then the next. Her hands and her fingers worked fine. Needless to say, all the smarties were devoured in super fast time. 

Concerning my second pregnancy, I didn’t feel I could get attached to this baby. It moved much more than Jayne had done, which assured me all was well. I told myself it was better if I didn’t get close, just in case I had to terminate. At fourteen weeks I had an ultrasound at Paddington and they measured the baby’s limbs. The news was good: the baby had extra long limbs. But still I wasn’t convinced and I wouldn’t allow myself to get close to this baby. At eighteen weeks I had another ultrasound, and again I was told the same good news. I felt relieved, but still, back in my subconscious I didn’t believe it. I rang my mum when I got home and I told her how I was feeling. She tried to convince me that they couldn’t be wrong twice, so I worked to get my act together and to love this baby.

One weekend before Jayne’s second birthday we decided to go to the RSPCA and buy a dog and that is how we added “Spiders” to our family. He is a twelve month old cross corgi / fox terrier. The name spiders comes from the old family farm (where his mother was born) near Young apparently there was an old dog on the farm called “spiders” and Warren took a liking to it. Warren was never allowed to have a dog as a child so was over the moon with this dog. Jayne loved Spiders but would get upset when he bowled her over; we had to teach him to be gentle with her. They became good playmates; Spiders became very protective of her.

My labour was once again really short. All my worries were over; Christopher was born perfect. Once again I cried. Warren was called into the room to see his son. Warren never stayed with me during the final stages of labour for any of our children; he fainted at the sight of blood and couldn’t stand to see me in pain. However this time he stayed whilst I was being cleaned, and I noticed him starting to go white. I asked him what was wrong; I had hemorrhaged. The doctor was called back in and it was discovered that I had two placentas. I didn’t enjoy what happened next. It was more painful than giving birth. They told me later that I probably had twins and lost one. 

The nursing staff was glad to see Christopher go home; as much as they loved him, he cried all the time. I couldn’t give him enough milk, he was always hungry (possibly because he had lived off two placentas) and he had projectile vomiting.  

What had I done? I had a screaming baby, jealous two-year-old—and I was run down from lack of sleep. HELP! 

Feeding times were horrendous; Jayne would stand on my feet and pinch me for attention, Christopher choked on his milk and then he would vomit across the room, screaming again because he was hungry. I quickly became run down and was put on iron tablets. I had to get tough with Jayne, so I began by putting her into her room and shutting the door whilst I fed the baby. I felt guilty because Jayne had had my undivided attention for two years, and now she had to share me. She screamed, kicked and cried. However, it didn’t take too long before she behaved herself and I allowed her in the room with me when feeding Christopher. With Jayne behaving herself, Christopher and I relaxed at feeding times. I began to love and enjoy him. He was put onto the bottle and started on solids at four weeks. We lived happily ever after…for a while. 

The comparisons between Jayne and Christopher were huge. I had been spoilt by having a baby that was contented with just me. Christopher was so active. He ate so much and grew quickly. He walked at seven months. He was a fantastic sleeper. He got into all sorts of mischief and Jayne didn’t like him much at all. I remember one episode like it was yesterday: Jayne was playing with a bag of pegs, she had them lined up in rows and colours, when along came the bully can (a nickname given him by Warren’s mother); he snatched one and ran. Jayne followed screaming and chasing him—Chris was only about nine months old—and she tackled him, snatching the peg. He pushed her over and all I could do was laugh hysterically.  

 Christopher eventually learnt how to talk and play well, and he and Jayne began to like each other and the jealousy stopped. Hooray!

 

 

 

 

 

 

The Arrival Of “Say the Bubby”  

The next two years Jayne kept well, except for chest infections and tonsillitis. Christopher also suffered with tonsillitis. We had many trips to doctors for antibiotics. 

Jayne was well known at the P.O.W. for having a sense of humour. She made it well known that she wasn’t about to wait all day for doctors to poke and prod her. At three-years-old she went up to the receptionist and announced that she had been there since eight o’clock (we had been there for five hours having x-rays, cardiographs, etc.); she said she had had enough and wanted to go home right now—she got their attention and we were seen to next. 

Just after Christopher’s first birthday, I became pregnant again. The baby was due on our 5^th wedding anniversary. I had good feelings about this pregnancy; I really wanted this baby. I was relaxed and even thought if there were any problems I would still carry it. All the signs were good; the baby moved heaps, and I felt bonded to it. I felt calm and was so looking forward to having this baby in my arms. 

I compared this pregnancy with my sister, Gail’s, who always seemed to be pregnant at the same time as me. I again suffered badly with morning sickness—this time even more so than the previous two. I was feeling anxious about the birth because my labour had only been two hours with Christopher’s and Jayne’s had only been four; I was concerned about having the baby at home.  

At three-years-old, Jayne was still very demanding and would not sleep, but she had grown into quite a little helper. She would help by folding up nappies and clothes, although I would have to redo them. She was looking forward to having a sister; she didn’t want another brother. I, too, wanted another girl. Yet I wouldn’t have been disappointed had I had another boy. I just wanted another healthy baby. And I knew that this would be my last pregnancy, no matter what the outcome. Incidentally, Jenny had given birth to a healthy baby girl just after Christopher; she now had three healthy children plus Kelly. I would be happy with three. 

We had been to see various orthopedic surgeons this year regarding Jayne’s bone deformities, especially her knees. Dr. Macdessi, or John, as he became to us, referred Jayne to Dr. Trevitt at Auburn, who then referred us onto Dr. Bates at Randwick. He wanted to do experimental surgery; cut away bone. He even talked about limb lengthening. He mentioned a young girl who was about six years older than Jayne who had the same syndrome. This girl had had operations to repair her knees. It meant Jayne having one leg in plaster for six weeks, and then the other. I was not convinced this was the way to go. We didn’t want Jayne to have any unnecessary surgery, so we asked for a second opinion. 

We finally saw Dr. Bellemore at the Children’s Hospital, Camperdown. He told us that eventually Jayne would need surgery, but later, when she was about ten. Great news; we had some years before we needed to do anything. We continued to see him for checkups. I also decided I wanted to see one cardiologist, not a team. John referred us to Dr. Cooper at Camperdown. He was great and we continued to see him. He loved Jayne’s sense of humour.  

During this time I joined The Short Stature Association of Australia. I had found out about them at one of our hospital visits. I wrote them a letter asking why they don’t make themselves known to new parents when children are born. I told them I could have done with their help when Jayne was born, and felt I could offer help to them now. I also included a poem which I had written about Jayne. After some time I received a letter from them asking if they could use my poem for publicity in hospitals. I agreed. I went along to some of the meetings but was very disappointed, basically because there were no other children like Jayne. 

Jayne started pre-school, and it didn’t go down too well. She clung to me and had to be pried away from my arms. Typical me, I rang every hour until time to pick her up. Yes, she did cry for hours, but the staff insisted that it would get better. She eventually stopped crying, but would not talk to any one for weeks. Because Jayne had a disability she was entitled to have a teacher just for herself. Mrs. Mullins was a wonderful lady, took special care with Jayne and soon won her over. I discovered later that her daughter had been one of the nurses that had looked after Jayne when she had her heart surgery. I remembered the nurse talking about her parents living in Merrylands—it’s a small world! 

There were a few incidents in which some of the parents’ ignorance really annoyed me. They assumed that because Jayne was short she was short in the brain as well. Some would talk loudly around her thinking she was deaf. I wanted to call them all idiots, but chose to ignore their stupidity instead. I knew she could run rings around the other children; she was writing her name and I had been teaching her to read. The pre-school put on a little play and the kids were given a book as a reward; Jayne brought her book over to me very excited and asked me to hold it for her. One of the mother’s mouth dropped in astonishment, and she said, “I didn’t know she could talk!” I couldn’t believe her statement. I looked at her and said, “Oh, yes, and she can wipe her bum too!” It was the beginning of me becoming very verbal when it came to Jayne. 

We had an appointment with another genetics doctor at Westmead. He had contacted us through the SSPA. His name was Professor Sillence, and he had been to the Amish Community in Pennsylvania. He had researched various dwarfisms, one being EvC, which is very common amongst the Amish. The photos we had seen earlier had been of an Amish baby. Professor Sillence was quite informative. However, he wanted to further his research by taking a biopsy from Jayne’s hip. Once I discovered it would mean surgery I said no, but did promise him that when Jayne needed to have her knee surgery I would allow him to do the biopsy. I didn’t want her to have any unnecessary surgery. 

It is now close to “Say the Bubby” being born. (How Tanya got the name “Say the Bubby” I really don’t know, but I think Warren started it.) Because I was concerned about having the baby at home, I was put into hospital on the evening of the 10^th of August, to be induced on the 11^th. If I had to choose between being induced and having a baby naturally, I’d go for naturally. 

I went into labour about midnight of the 10^th, before being induced. The hospital had rung Warren to tell him to come up. Assuming I would have the baby in no time, he organized Jayne and Chris to be babysat, saying he would be back shortly. But I was given an injection in the labour ward to stop the contractions; I believe they stopped the birth because the doctor wasn’t on duty until morning. The doctor arrived around 10 a.m. and induced the labour. He had returned to his practice thinking I would be hours, but had to return almost immediately. I gave birth at 10:45 a.m.—I hadn’t even had time to think about contractions. Jayne and I got our little girl. Tanya was born with a full head of strawberry blonde hair.

Of all my babies Tanya was the most contented, very placid. She was no trouble at all. And I think by the time I had Tanya I had managed to get it right; I was more relaxed. I didn’t panic with every little cry or cough. Jayne and Chris were not jealous. They loved her. They were so gentle with her, and it was just beautiful to watch them all together…. 

 

Someone asked me why I called this story the Golden Box. My reason; I had read that someone had been given a choice of a Golden Box or the Treasure that the box held. If they chose the box they would not want for anything in life, however if they chose the treasure they would make sacrifices and be challenged all their life. 

My children are my treasure. I want to keep them safe, make sacrifices and be challenged. As I read the story about the Golden Box, I knew it was for a reason. I believe that not only do I have the treasure but I also have the Golden Box. I would not trade them for anything in life; they are everything I ever wanted. 

 

A very recent photo of Jayne at aged 26

 

  

 

Some day I hope to continue with the next 21 years of not only Jayne’s life but that of my other two children.

 

By Carol Armstrong

(Written sometime in the late 80’s I had a bad habit of not dating my work. I had forgotten that I had written this until two years ago when I found it on a computer disk along with other things I have written…I have deleted a few paragraphs and added a few photos other than that it remains as I had written it 15 years ago.)