Marie, Malcolm and Jessica

This page is fourth of the set of Personal Stories of Type I babies.

Our precious baby, Jessica Louise Coutts, was born on 23rd May 1997, but sadly, after bringing so much joy and happiness to us, and everyone who knew her she died ten and a half months later, on 12th April 1998. We knew we could never replace her, but after much soul-searching, and thanks to the availability of pre-natal testing, we were determined to try for another baby. I fell pregnant during September 1998, and eleven weeks later had the pre-natal test. We were told that hopefully, the results would be known in a week. That week seemed like an eternity, but fortunately when the Consultant telephoned us, we received great news. Luckily the test was satisfactory and six months later, on 17th June 1999, our lovely son, Ryan James was born.

The Weeks Before The Diagnosis

At Jessica's six-week check up, we were told that she had a mild hypotonia, but not to worry about it, as it would be re-checked at twelve weeks. However, when we viewed the videotapes that we had done since her birth, we noticed that she did not move as freely as she used to. We consulted our GP and he referred us to a paediatrician. In the weeks leading up to the appointment, Jessica seemed to be constantly at the doctor's surgery with suspected colds, viruses and breathing problems.

Jessica was twelve weeks old when she saw the paediatrician for the first time. We asked him why she was floppy, and moved less than in the early weeks of her life. He said that there could be various reasons, and that it would be a bit like eliminating all the branches of a tree, and that Jessica would need to undergo tests to try to determine the cause. He arranged for Jessica to have a head x-ray and a blood test. He then arranged to see us again in four weeks, and said that he would arrange for Jessica to have some physiotherapy. At our next appointment when Jessica was sixteen weeks old, she still had not had any physiotherapy. We were told that the tests to date had not revealed anything, so he would be arranging for Jessica to have a head and abdomen scan, an electro-myogram and a further blood test, and he would see Jessica again in November, when she was six months old.

In the weeks leading up to the next appointment, Jessica had the blood test, the head and abdomen scan and eventually, on 31st October, her first physiotherapy appointment. The physiotherapist checked her all over and told us, "My aim is to get her to walk, but I cannot guarantee it!" She asked us if Jessica had had the electro-myogram yet, and gave us a leaflet to apply for disability living allowance for her. We were shocked and in stunned disbelief.

The next day, Malcolm rang the hospital enquiring about the electro-myogram test, and was told that she was on a waiting list, and the earliest that she would be seen would be at Christmas. As we were due to see the paediatrician in November, he asked if we could pay to have the test earlier. They asked if we had an insurance policy for her, to cover the cost. Malcolm replied that when you are told that your five-month old baby daughter may never walk, we would pay whatever it cost ourselves. Fortunately, a few days later there was a cancellation and Jessica was fitted in. We then had to wait for our next appointment with the paediatrician. Jessica was now getting physiotherapy twice a week.

When we saw the paediatrician, we told him that Jessica was still having breathing difficulties, especially during the night, and that we had spoken to our doctor about it on several occasions. He asked us if she had ever gone blue during one of these episodes, and we said that we did not know, as it was always dark, and that we had sorted it out by patting her on her back, with her head facing downwards. He said that he would arrange for Jessica to be kept in hospital overnight for observation, and that although the test to date had not been conclusive, he wanted us to take her to Bristol Children's Hospital the following week for a muscle biopsy, as he suspected that she had Spinal Muscular Atrophy Type I. We asked what, if it was that, could be done about it, and he said that unfortunately, nothing could be done. At this stage we did not know what the implications were, and were hoping that he was wrong. I stayed with Jessica overnight while she was monitored, but neither of us got much sleep because of the noise of the machines, so it was arranged for us to be loaned a machine to monitor Jessica at home with the support of a community paediatric nurse. The machine and test results were taken away on the Friday and we were due to go to the Children's Hospital on Monday 24th November for the biopsy, but on Sunday evening (23rd) Jessica was admitted to the high dependency unit of the children's ward of our local hospital with a severe respiratory virus. Jessica was placed in an oxygen head box and attached to monitoring leads of several pieces of equipment. The doctors and nursing staff were very concerned about the rapid deterioration of her condition, and on retrieving medical notes, turned to us with a worried look. They told us, "You do know that we will do everything we can." It was arranged for us to have a parent's bedroom so that we could stay at the hospital with her twenty-four hours a day.

The Diagnosis

Due to the seriousness of Jessica's condition, we were asked to give permission for a muscle biopsy to be taken on the ward, because she was too ill to be transferred to Bristol, and it was important to know exactly what medical condition she had in order to determine her treatment. We asked how they would know, bearing in mind we were to have gone to Bristol for the biopsy, and the paediatrician told us that if it were SMA, it would be very obvious from the biopsy. We agreed for the biopsy to be done on the ward, but later it was decided to take her to theatre in case any intervention was needed. The biopsy was taken on 27th November 1997, and later that evening we were told the worst news possible, Jessica's muscle biopsy had revealed SMA Type I, for which there was no cure.

Unfortunately, the consultant paediatrician, whom we had come to greatly respect, was away on business when we had asked if the results were known, and as a result the task of telling us fell to the senior registrar. He tried to break the news to us as compassionately as possible, and said that we would be able to look back on the precious six months that we had just spent with Jessica, but he was totally unaware of the circumstances that we had endured during this period. We will, however, always admire the caring way in which he broke the news. Malcolm and I were silent for a very long time before we could speak, and then we had the unenviable task of relaying this sad news to both sets of grandparents, aunts and uncles.

Jessica was a fighter, and eventually got over the respiratory virus, and on 22nd December, we went home to spend Christmas together as a family. We then travelled up to my parents in Ashton-in-Makerfield (near Wigan) for the new year period, as we knew this would probably be the last time they would see her. Although Jessica had left the hospital, we now had to do suction, as required, using a portable suction machine. This proved to be almost once a day, and we also had to give her tube feeds, in order to top up the amount of mild that she was able to take orally. We found that Jessica was no longer able to travel very far in the car without being sick, so we had to make several stops on the 280-mile journey. On 17th January 1998, Jessica was again taken seriously ill and was readmitted to the high dependency unit of the children's ward, where she was courageously survived numerous life threatening episodes, before finally passing away on Easter Sunday, 12th April 1998. Throughout her life she was an inspiration to everyone who came into contact with her, and is remembered by everyone with lasting fond memories of her happy smiling face and talking eyes.

Toys and Play Activities

Jessica liked to watch everything around her with great interest, and up to the time of diagnosis, play activities would focus around interaction with toys that were manipulated by us, and others. When she started seeing a physiotherapist, we were loaned equipment to help her to sit, and for us to carry out physiotherapy type exercises, which Jessica seemed to think was play and enjoyed greatly. During her time in hospital, we used to play her music videos (mainly 'Dance with the Teletubbies') and roll her around to the music in her hospital bed. I also used to dance around and sing along, which amused her. She would be lying on her back and I would take her left arm and left leg, and roll her around the bed. We had bought her a large green vanilla scented plastic ball, which she would roll up and down on her chest. We also bought her a helium balloon, which she loved pulling around by the string. She also liked the baby's play gym, peek-a-boo games, crinkly lightweight toys, and people blowing bubbles for her, as she would pop the bubbles with her hand. She had a special mobile in hospital, that had glass mirrors, bells and a ball to pull, which she enjoyed. She had a doll's comb and mirror that she liked to hold and play with. Friends used to make her laugh by playing with the musical toys and dancing for her. We also found that large empty crisp bags were very good for her to play with.

Weight and Movement

Jessica was always a very good weight, but from time to time, after she was first admitted to hospital, we had to add Duocal (a powder, which would thicken the milk, containing vitamins and minerals) to her milk in order to keep her weight up. It was only in the last two weeks that her weight slowly dropped. She had a lovely chubby little face and could lift her forearms, but not her legs. She liked to touch dangly earrings and necklaces, and squeeze your nose. She delighted in waving around anything small that she could get hold of, like the doll's comb and mirror, and small syringes. She had little or no head movement, but compensated by talking with her very expressive eye movements. She gave the impression of a wise old lady and you could almost read her thoughts by the way she looked at people.

Physiotherapy

Before diagnosis, the physiotherapist recommended a number of exercises for Jessica, which included leg and arm exercises with Jessica lying on a cushioned wedge, sitting her up straight in a special chair and getting her to play with beads and toys on a table, which was attached to the chair. After the diagnosis we asked whether the physiotherapy would be any good, or if it would achieve anything, and were told that it would help to prevent Jessica's joints from stiffening up. The physiotherapists at the hospital taught us how to do chest physio and suction. They called it 'tip and tap', which was - tip up the baby, pat their back to loosen mucus, then suction to get rid of it.

Suction Machines

The physiotherapists at the hospital taught us how to operate the suction machine. We wore thin surgical gloves and used KY Jelly to try to protect the inside of her nostrils. We used a separate suction catheter for her nose and mouth to help prevent infection. When out of the hospital we used a portable suction machine. When possible Malcolm did the suction, even in hospital, as Jessica had become used to the way he did it. The duty physiotherapists seemed to be more used to dealing with older patients, which proved challenging for both Jessica and themselves.

Oxygen Machines

From Jessica's readmission to hospital in January 1998, aged eight months, she became dependent on oxygen, and although it could be regulated down to the least amount, 28%, she could not manage without it. However, when the hospital was given a humidified oxygen machine to try, they used it for Jessica, and this warmed oxygen proved to be a wonderful stimulant for her. We noticed a remarkable difference, as she began smiling again, and apart from the fact that she always had to have an oxygen mask, her quality of life was on a par with how she was before she needed oxygen. On occasion, she also had spells in an oxygen head box and at other times small oxygen tubes were taped to her face with the oxygen directed up her nose. The big difference was that the non-humidified, or cold oxygen, used to cause mucus lumps in her lungs, which if not cleared by physio and suction, would lead to her saturated oxygen levels dropping. Also while in hospital, she was given ventolin via diffuser to help keep her airways clear and assist her breathing.

Feeding Time: Tubes, Pumps (Weaning, etc.)

Jessica ate limited amounts of baby foods quite well up until the last six weeks, after which time she could only take milk and Duocal via an NG tube. The hospital dietician gave us a target amount of milk per day to give Jessica, into which we had to put Duocal. Before a feed, we would test that the NG tube was in her stomach, by doing the litmus paper test.

When we were due to be going home at Christmas, we were shown how to use a special machine that would give and overnight drip to slowly drip feed her the baby milk, but we never had to use this. Whilst in hospital, we also used to give Jessica flavoured lollipops and pieces of chocolate to suck. She also used to like to suck on a small sponge swab on a stick, which we used to soak in bottled water.

Antibiotics and Other Drugs Used

Jessica was only given antibiotics and other drugs from the age of six months when she was in hospital, which were for her chest infections and pneumonia. When she became really ill, she also had to have an IV drip fitted to receive drugs and a glucose solution, as she was unable to swallow anything orally. Her mouth used to get very dry and we used to give her the small sponge swab of water to suck. In the latter stages, Jessica was also given steroids, and during the last week of her life, she received small amounts of diamorphine. At this time, she had very bad diarrhoea, and also contracted the deadly hospital bug - MRSA.

Hospices and Homecare

We recommend that if you get the chance to go to a Hospice, you must go. We have lovely memories of Little Bridge House in North Devon, where we spent three days with Jessica between hospital stays, during early January 1998. The staff were wonderful and it was like five star luxury. They have lots to do for adults and children alike. We took Jessica in the jacuzzi, which she really loved, as she could move around more. We also played with her in the ball pit and on the special outdoor swings. She loved the music and lights room, and enjoyed pram pushes around the grounds. Malcolm and I played snooker, used the computer and went on bike rides where possible. Jessica spent the last three months of her life in hospital. Malcolm and I had a side room off the ward. Jessica was frequently sick; therefore her clothes and bedclothes were constantly being changed. She had a daily bed bath, which could be quite tricky with all her wires and drips. In a way, we preferred being in hospital to being at home, as all the professionals were at hand and we could both grab sleep at times, knowing that she was in safe hands. It was still very stressful nevertheless, as we were often called out of bed in the night to be by her side when her oxygen saturations were dropping. However, on one occasion when she was a little better, we were able to push her around the hospital in a pram complete with oxygen cylinder and oxygen saturation machine.

Other Information

At the time of Jessica's diagnosis, both Malcolm and myself were with her twenty-four hours a day. This was because her Paediatrician had advised us that, due to the viral infection that she had caught, her condition was life threatening. He also very kindly wrote to both our employers, outlining the seriousness of Jessica's condition and requested that they give us consideration and grant us compassionate leave. This was very helpful, as his intervention helped explain the situation and the consequences of Jessica's illness, which up to this point, we had been unable to get them to understand.

It has been nearly eighteen months now since Jessica died. It has not been easy, but we have really tried to move forward. We have found that constantly talking about her to family and friends has helped, and although we didn't believe it at the time, it is true that the passage of time does take away some of the pain. We will always remember Jessica, and we are so glad that we filmed her on videotape and took so many photographs that we can now look back on. We truly feel blessed for having had her as our daughter and for being able to spend those precious short months with her. She was a real giver and taught us so much. Thankfully, we now have a healthy baby son, Ryan, who, although will never replace her, is like her in many ways, and at times when we are sad thinking about Jessica, his big smile wipes away the tears.

< Back | Index | Next >