Our story began on 9/9/99 when our beautiful daughter Jaymie-Leigh Parke was
born. We already had two gorgeous girls, Becky and Nikki who were now aged 10
and 7. It was to be our last baby as I had already had three caesarean sections.
My math is not poor; our first child was still born, a little boy born at 30
Jaymie-Leigh was born perfectly normal and was so up until the age of four
months. She was reaching all of the normal milestones, smiling, chuckling, and
playing with toys. Then it all began. She was crying and crying and crying,
stopping for perhaps only an hour at a time, but why? Could it be teething? We
bought every teething remedy on the market. Could it be colic? We bought
different things for that as well. No child could cry for that many hours in a
We went on holiday in April, a well-earned break we thought. She cried nearly
all the time we were there. People just kept on staring in judgment. One lady
even said to my Mom “These young mothers haven’t got any patience” as I
was quite frustrated at the time and I was commenting on people looking at us.
We came home and made an appointment to see the doctor. Our usual doctor
was away on holiday so we had to see a locum doctor. This was the first of four
appointments in two weeks. He told us Jaymie-Leigh was teething and prescribed
the usual painkillers. The next time we went we saw our own GP, Dr Cartwright.
He said she had mouth ulcers and a throat infection, which wasn’t surprising
considering the amount of crying she’d done. He prescribed antibiotics. The
next doctor was another locum doctor who told us she had a cough and prescribed
cough mixture. I never even mentioned a cough. The next day I took JayJay (as we
called her) back to the surgery where we saw yet another locum doctor. It was
holiday time so Dr Cartwright wasn’t there during this time. Finally this
doctor noticed that something wasn’t quite right. He said he didn’t like the
way she was just sitting there so he contacted a pediatrician there and then. He
made an appointment for Jaymie-Leigh to see him on 4th May 2000.
Over the next week or so Jaymie-Leigh deteriorated. When she wasn’t crying she had a blank expression on her face. Feeding was a problem but only because of the crying. She had lost interest in her toys. Her thumbs were tucked in tight, which we thought was for comfort. Her limbs became stiff and her head arched back when she cried which was still most of the time. She was obviously in severe pain. She’d look at us screaming as if to say, “Help me”. We felt so helpless, so tired and frustrated. My husband Richard and I were taking it in turns to go to bed.
It was 2nd May. We’d had the usual sort of night, I went to bed for a few
hours then Richard woke me up and off he went. I washed and dressed JayJay, she
looked worse than ever. She’d got a massive umbilical hernia from all of the
crying. My Mom had just come home from a weekend break and she offered to have
JayJay for the night so that we could spend some time with Becky and Nikki and
get a good night sleep. She phoned me the next morning and said that she thought
Jaymie-Leigh should see the doctor again because she seemed to have lost weight
and having not seen her for a few days noticed a change in her. I got ready and
went round. I decided I’d had enough with doctors’ opinions and that I would
take her to Accident and Emergency at the hospital. We waited there for hours
until we were finally called in for an assessment. Two doctors saw her and they
said that I was being a little over protective and that they couldn't see
anything wrong. The fact that she had such a big hernia and that she hadn’t
had a wet nappy for nearly two days should have made them a little bit curious.
I told them that I wasn’t satisfied and that I wanted another opinion. They
admitted JayJay to the children’s ward in Wordsley Hospital. Luckily the
hospitals are very close by.
We had to wait until the next day to see a pediatrician. She was assessed when
we got there by a doctor for admission purposes only. The next day Dr S came. He
looked at JayJay, bent her limbs and did a few physical tests. He then told me
that my daughter was more than 50% behind in her development. How could this be?
Richard had stayed at home during the night to look after Becky and Nikki. I
sobbed all the way to the telephone. I couldn’t even get the words out. The
rest of the day was spent on blood tests, head scans and eye tests.
I told Dr S that she was alright before but as time went on we realized that he
hadn’t listened to a word I’d said. The “over protective Mother thing”
again. Later that day I spoke to a trainee pediatrician and I asked what they
were testing for. She said that they were testing for metabolic disorders.
“And what does that mean?” She explained something that meant nothing to me;
I hadn’t got a clue what she was saying, then she said, “And if she ever
walks....” What did she mean? Would our little girl never walk? I just wanted
to take her home. It was all too much.
We went home that evening so upset but not really believing what they had said. Children don’t just lose skills they’d already got. “It must be the vaccinations, there’s no other explanation.
We were told to go back in six weeks for the results. In the mean time we
had to take her for a CT scan. She was still crying for about 20 hours of
the day. It was like living on a time bomb. We thought she was
definitely vaccine damaged.
We set out for her appointment. I felt sick. I was crying on the way to the
hospital in fear of what would be said. We went into the room where Dr S sat. He
gave us a speech saying that she had signs of cerebral atrophy, meaning that her
brain was smaller than it should be and that it would have happened in the womb
due to an infection. My husband looked at me and I looked at him, both of us
were thinking the same thing “I haven’t done anything wrong.” He then
said, “She may not know the world
around her, she may never be able to feed and look after herself and she may
always be in a wheelchair. The more time you put into her care the better chance
she’ll have of doing things.” Had he rehearsed this speech? “Come back in
We left the hospital feeling devastated. We talked about how we’d do
everything we could and have her the best of everything to help her. We used to
sing to her, talk to her, play with her, massage her and exercise her limbs,
even though we weren’t sure if we were doing the right things. Becky and Nikki
would play with her for hours although there wasn’t much response as by now
she’d lost her facial expression.
We visited the Children’s Assessment Unit at Wordsley Hospital a few times,
still with no results as to what caused these problems. Every time we went they
wanted more blood. Then we’d get a letter about a week later saying that they
hadn’t got enough blood and we’d have to take her back. They could never
find a vein so they’d end up holding her down trying to squeeze blood from her
hands and feet while she was screaming.
It was coming towards August. Jaymie-Leigh was still crying. Richard and
I were exhausted. Feeding had now become a problem. JayJay was fine on blended
solids but milk and juice were making her choke. Every feed time was a
nightmare. It was summer time so she needed extra fluids. We had an appointment
to see Dr S for a follow up appointment and I told him the problem. He gave us
one of his speeches again. Had he listened to a word I’d said? “Take her to
the Path Lab we need some more blood.” I told him the problems we’d had,
being sent for when there wasn’t enough blood and he told us to take her to
the ward if there were any problems. After they’d poked and prodded at her
hands and feet, the ward was where we had to go.
Whilst we were on the ward a nurse came to us. She said, “Dr S has just heard
that you have photos of Jaymie-Leigh from before she became ill. He would like
to see them as soon as possible. Could we pick them up from your house?” We
had already told him about the photos but he was never interested. The photos
were fetched the next day. The same day we had a phone call from the hospital
asking us to take her onto the ward. Had they finally realized that we were
telling the truth? Dr S talked to us and he said that he didn’t realize how
well she had been. I could see the anger in Richard’s face. He told us that
she may have a metabolic disorder and that it could be very serious. I started
to cry again, I say again because we were told before that Jaymie-Leigh might
have something called Rett’s Syndrome, which is another serious disorder.
Richard comforted me and reminded me of all the other times they had said, “It
could be this or it could be that” and I’d been upset for nothing. Anyway
they decided to do a lumbar punch test. That
was the only thing I couldn’t watch. We left the room feeling sick to our
stomachs. After staying on the ward for a while we were sent home.
The next appointment proved nothing again. By now we had strongly got it into
minds that she had been damaged by vaccine. Even Dr Cartwright was convinced.
The choking had got worse by now and JayJay seemed to be losing weight. I told
the pediatrician of my concerns and that I wanted something done about it now,
not when she was too ill to fight. He decided to admit her onto the ward where
her feeding would be monitored. We took her in that evening but it wasn’t
until lunchtime the next day that anyone even looked at her. Eventually the pediatrician
came and gave me a bottle and said “Show me how you feed her.” I did, and he
told me her position was wrong. Did he think I was stupid? I’d tried every
position there was. He finally decided there was a problem. “She’ll have to
have a Nasal Gastric Tube fitted.” When he’d gone the nurse explained the
procedure. I was taught how to feed her and she seemed to settle down from the
crying a little bit. The next day she had to go for a Barium Swallow Test. We
later found out that her swallowing reflex was slow.
The next two weeks were spent in hospital just sitting there being shown how to
give bolus feeds and how to use a pump for night feeds. They tried to get
Jaymie-Leigh an appointment at Birmingham Children’s Hospital where the
specialist doctors are. She needed a MRI scan and if she was an inpatient at
Wordsley Hospital she would get an appointment sooner. Every day I asked if
there was an appointment, every day they said there were no beds available. They
told me on the Friday that she had an appointment on the Monday. They trusted me
to feed her and said I could take her on home leave for the weekend but we must
be there for 3 o’clock on the Sunday.
Over we went, not realizing that we would be there for another two weeks. They
did the brain scan and numerous other tests such as eye tests, nerve conduction
studies, a full body X-ray. The only good thing was that she was hardly crying.
Perhaps her tummy was feeling better being full.
We saw a pediatrician who thought we should see a genetics specialist. He was a
very nice doctor and he actually listened to what we had to say. I showed him
photos of Jaymie-Leigh as she was before, happy and content, playing and sitting
up, none of which she could do now. He told me that her condition was very
serious. I felt like a ton of bricks had hit me. It seemed worse coming from the
specialist doctors at Birmingham. I went to the phone, again sobbing, to let my
husband know. He came straight over.
All this time JayJay was in hospital I never left her side unless family came to
visit then Richard would take me home for a few hours for a decent meal and a
shower. There were facilities at the hospital but I sometimes needed the break
and it was a bonus to be able to meet the children from school. The other
children need that little bit of attention, although Becky and Nikki never
complained, they were really well behaved.
It was coming up to Jaymie’s first birthday. I told the doctors that I
didn’t want her to spend it in hospital. They let us go home for the weekend;
everyone came to see her on her birthday. We had a little party and the luxury
of sleeping in our own bed. Monday morning came and we had to go back.
All her blood results were still proving negative and so she had to have more.
We knew something had happened to her brain but what? Every test she had such as
the nerve conduction studies and eye tests were not giving good results. Her
nerves were not reacting properly and her eyes weren’t working properly. I
cried at every test. I knew there was something wrong but for it to be confirmed
The week after I asked if we could take JayJay on holiday for a week as in
August we had taken the children away to the seaside and Jaymie developed a
nasty rash. We took her to the hospital in Wales but no one could understand why
she was so floppy. I tried to explain that she was usually like it but not
having a diagnosis made it difficult for them to understand. Her rash got even
worse the next day so we decided to come home, although Becky and Nikki stayed
there with their two Nans. The bad thing was it was Nikki’s birthday, yet
another upset, I wanted to be with her on her birthday.
This holiday was much better. Although we had to take all of the feeding
equipment and plan everything around feeding times, JayJay was much more settled
and at least we were all together. We knew where the hospital was in case of an
We came home after a week and tried to put a touch of normality back into our
lives. I took Jaymie to the doctors a few times for different things such as
nose and throat infections, which were probably caused through the NG tube. Each
time, Dr Cartwright phoned the physiotherapy department trying to get an
appointment for her. The pediatrician we supposed to have referred Jaymie-Leigh,
but we seemed to wait forever.
Eventually, we got an appointment. We had to wait as there is a waiting list for
appointments and patients are given appointments by priority. Hydrotherapy was
also arranged but we had to take her to a special needs baby group for it. We
were told that we’d meet other parents there who were in the same position as
us and maybe we could talk to them to get some support. This seemed like a great
idea, but when we got there we realized that although the children obviously had
problems, they could play and do things. Jaymie-Leigh couldn’t do anything. It
was really upsetting. Still, I used to take her just for the hydrotherapy, which
she loved. She would be so relaxed for hours afterwards.
One day we had a phone call, asking us to take JayJay to Birmingham Children’s
Hospital for some more blood tests. I asked while we were there what they were
testing for. “We are testing for something called Leukodystrophy,” they
said. “She doesn’t present as a child would with this condition, but we want
to rule it out. Don’t look it up on the internet as the information may not be
correct and you may upset yourselves for no reason”.
Of course, we went home and looked it up in a medical book, as we didn’t have
a computer then. “I hope it’s not this,” Richard said, “It’s really
bad”. There was a brief description, about two paragraphs long, generalizing
We were now into October and we thought that we’d decorate to cheer ourselves
up and smarten the house up as we were getting people visiting more regularly.
We had an appointment to see JayJay’s usual pediatrician on the 17th,
and another appointment to see the pediatrician from the Children’s Hospital
on the 18th, both at Wordsley Hospital as the Birmingham doctors run
a clinic at the local hospital every so often. We went to the Children’s
Assessment Unit on the 17th, where the usual speeches were made. All
they were worried about was that Jaymie had put on too much weight. Dr S asked
what the Children’s hospital had tested for and Richard had told him that it
was something called Leukodystrophy. “Oh no, it’s not that. I’ve already
tested for that”, he said. We were relieved, having read about it.
Jaymie-Leigh’s physiotherapist was in the room with us, as she wanted to hear
if there were any suggestions for her treatment. We went home as usual and
carried on with what was now everyday life.
The next day we continued with a little more decorating and, as it was getting
close to the appointment time, we downed tools and got ready. We thought that
they couldn’t tell us anything different from the day before. Little did we
know that that day would change everything!
We went off to the hospital and we were called in quite quickly. We sat down.
Richard was holding Jaymie-Leigh. The pediatrician from Birmingham looked at us
and said, “I think we may have a diagnosis”. My heart started racing. Once
again I felt sick. “We’re just waiting for a phone call to confirm it”. We
looked at him, waiting to hear what ‘it’ was. The telephone rang and he
spoke to someone as we sat there, lost. Finally, “we have a diagnosis”, he
said. “It’s something called Krabbes Leukodystrophy”. How could this be?
The doctor the day before had said that he had tested for Leukodystrophy, he had
not said that there were different types. The pediatrician explained in medical
terms what the condition was. Richard asked what it all meant. “It means her
brain will slowly shut down. She may only live until school age so enjoy her
while you can. Take her on lots of daytrips and give her lots of love”. I
couldn’t believe what I was hearing. “What do I do if she’s poorly?” I
asked, looking at him and holding back the tears. “What do you mean?” he
asked, “If she’s dying?” At that point I walked out of the room. Our
beautiful little girl was going to die. The supporting nurse came after me. She
took me into an office and put her arms around me. “I now how you feel,” she
said. “No you don’t,” I replied, “To you and them in there she’s just
a file. She’s my little girl”.
The only thing I remember after that was traveling home. Seeing Richard in the
car mirror, crying. How was I going to tell my Mom? She was recovering from a
mastectomy, having just found out that she had breast cancer.
Mom opened the door as we pulled up. We went into the house and sat down. She
looked at us know that something was wrong. We told her what the doctor had said
and she broke down in tears. We then had to tell Richard’s Mom and everyone
else; it was as though we were talking about someone else’s child.
For the next couple of days I couldn’t even look at Jaymie properly. I fed
her, dressed her and cared for her but I couldn’t look at her. Suddenly I
thought to myself, “What are you doing? She’s still your baby, the same
little girl you loved and played with before!” I picked myself back up and
carried on as before.
Now we were hungry for information, but all we had been given was a scrap of
paper with “Krabbes Leukodystrophy” written on it. A friend of mine phoned
to ask how Jaymie-Leigh had got on at the hospital. I told her the diagnosis and
she said that she’d ask her sister to look on the Internet. A few days later
she sent some information that she’d found, which included CJ’s story. We
were devastated. We now knew that instead of the possibility of JayJay living
until school age it was more likely that she wouldn’t even live to the age of
We lived our lives from day to day, which we had been doing since her illness
started. We never planned anything because if we did we knew that Jaymie would
be poorly. The weather had started to get cold and if we took her out she would
get a chest infection so she stayed indoors. Her body temperature was another
problem, but, whereas in other children with Krabbes seem to have a high
temperature, JayJay would go so cold and it was difficult to raise her
temperature back up. So much for taking her on lots of daytrips! The only times
she left the house was if it was a nice day, which wasn’t very often, or if I
took her to my Mom’s. Her Aunty Deb would have her for a few hours on a
Saturday afternoon to give us a break and to spend some time with her. I knew
she could look after Jaymie-Leigh confidently and we were, and still are, very
grateful. It was also nice to know that Deb and her family were interested in
her as we hardly ever saw anyone. People didn’t know how to cope with the
situation and so avoided it.
We had a visitation from the Genetics Nurse. She is a lovely person and
explained to us how JayJay came to have this condition as well as how the
disorder might progress. She told us that JayJay might start to have Myoclonic
Seizures. We didn’t really know what they were but we soon found out.
Jaymie-Leigh started to have ‘shock-like’ episodes in her arms. It was quite
scary, but as Beryl, the nurse, had told us what to expect, I telephone the
doctor and explained to him what was happening and collected a prescription. He
prescribed Epilim (sodium valproate). This quickly calmed things down, although
the dosage was changed throughout her illness.
Christmas was coming and I was dreading it. I knew that if anything happened to
her at this time it would be a time of unhappiness forever and Becky and Nikki
needed it to be a happy time. Everything went quite well except for my Mom being
poorly at Christmas lunch. We went to Richard’s Mom’s house in the evening
as we had always done, but we put a ban on smoking in the house, which everyone
respected. On New Year’s Day we went to my Nan’s house because it was her
birthday. The day was OK but the nighttime was a disaster. Richard had been out
for a few hours with some friends. When he got back, he opened the door, and as
I looked at him I saw blood streaming down his face. He had been knocked over by
a car. What a beginning to the year.
I had to phone Deb (Richard’s sister) to take us to the hospital and asked her
daughter, Claire, to look after the children. I knew that Claire knew how to
feed Jaymie-Leigh and how to look after her as she had been to her Mom’s most
Saturdays to spend time with her. Luckily Richard was not badly injured and he
was discharged from the hospital after a few hours.
We had a bit of a settled time for the next few weeks. Jaymie-Leigh was
deteriorating slowly but I didn’t like to admit it to myself. She was pretty
comfortable though and we enjoyed our time with her. She hardly ever opened her
eyes anymore, but she always knew who was holding her.
Suddenly she became quite ill with a chest infection. Her nose was streaming and
the only way to make her comfortable was to lay her over our knees on her tummy.
This was her favorite position anyway but at the time it was the only way to
move the secretions. She was a very poorly little girl. We did have a suction
machine by now (after being on yet another waiting list to get equipment), but
to get the phlegm to the right place to be able to remove it was another
difficult task. We were never told how to care for Jaymie-Leigh throughout her
illness; we had to learn ourselves, as we went along. There were times when she
would suddenly stop breathing. The first time this happening I panicked and had
to shout Richard, who was in the garden at the time. He quickly grabbed her off
me. I think the shock brought her round.
We took another trip to the doctors. Dr Cartwright asked us to take a sample of
phlegm to the pathology lab and to take JayJay for a chest X-ray. I telephoned
the surgery a couple of days later to see if the results had come back and to
see if she needed any treatment. The receptionist said, “The doctor would like
to see you. He’ll come to your house.” We knew it was bad news for the
doctor to want to visit us at home. We sat waiting for the doctor to arrive, not
really knowing how to occupy ourselves. I had butterflies in my stomach. I said
to Richard, “I feel like I’m waiting for her funeral car to arrive”. I
couldn’t stop crying after that.
Finally the doctor arrived. He told us that he thought Jaymie-Leigh’s time was
near and that he wasn’t quite sure what to do, as he had never dealt with a
dying child before. He telephoned the pathology lab for the results of the
Sputum Test and to find the results of the X-rays. The X-rays were clear but
JayJay had an infection in her nasal passages. The pathologist said that he
didn’t think it was worth treating but Dr Cartwright said that if it made her
more comfortable then it was worth it. He phoned the Acorn’s Children’s
Hospice, which is a brilliant hospice for children with terminal illnesses. They
put him in touch with another doctor, who works closely with these children, and
he suggested that a Nebuliser might ease Jaymie’s distress and that
antibiotics should get rid of the infection. Dr Cartwright welcomed the advice
and provided us with the equipment and medication.
We had been introduced to the Acorn’s Children’s Hospice a few months
earlier and we were offer respite if we wanted it. Although we were glad of the
support we never let Jaymie-Leigh out of our sight. The Acorn’s Family Worker
visited us on occasions and listened to our problems, which was a great comfort
because no one seemed to want to talk about Jaymie’s illness and it was good
to get things out sometimes. I’ve never really explained the full extent of
JayJay’s illness to my Mom, even to this day, as I was trying to protect her
from the upset.
Jaymie-Leigh seemed to recover quite well over the next few days. She was still
having episodes of not breathing so we couldn’t leave the room if there was no
one there to watch her. We settled back into or usual routine, thinking
everything was back to ‘normal’. We would sit her in he big purple beanie
chair, which I happened upon one day while out shopping. The Physic department
had order a chair for her eight months earlier and it arrived just after this
scare so I told them to take it back as it was too late. She was more
comfortable in her big purple chair.
On Sunday 4th March, I was at my Mom’s house holding JayJay.
Richard had been to play football and had gone for a drink with his friends as
he usually did on Sundays. Suddenly, Jaymie stopped breathing. I tried to get
her to breathe again in the usual ways, but this time nothing worked. She was
turning blue and was very distressed. I started screaming, “Phone an
ambulance”. I was panicking, Mom was panicking, Becky & Nikki were both
screaming. I dialed 999 and the operator was on the phone trying to tell me how
to revive JayJay. Eventually by using mouth-to-mouth resuscitation I managed to
bring her back, just as the paramedics arrived.
Previously, Richard and I had discussed what we would do if there circumstances
arose. We had decided that we did not want JayJay to be resuscitated if she was
ready to go but panic had taken over me. I did exactly the opposite to what we
had decided. We knew that she was suffering and to prolong her life had been for
purely selfish reasons. But how could I just stand there and let her die? She
was in such a bad state.
I went to the Accident and Emergency department with the ambulance. A team was
there waiting and they fought to save her life. They took JayJay behind a
curtain and sat me just outside to wait. Eventually they called me in to be with
her. They were trying to find a vein to administer drugs but they couldn’t
find one so they forced some sort of device through the bone in her shin. She
couldn’t even cry, but I could tell she was in pain. Why had I put her through
this? The tears rolled down my face. My Mom had managed to contact Richard and
he walked in just prior to this. He looked at me and said, “This isn’t what
we wanted for her”. “But how could I let her die?” I said. He told me that
he understood. The tears were rolling down his face too. It wasn’t a time for
blame. “This will never happen again”, I told him.
As the doctors stabilized JayJay they said that I could go over to her. I put my
face next to her and said, “Hello my sweetie”. Her head turned to me as if
to give me love. That meant so much to me. When we had taken her to the
Birmingham Children’s Hospital in January for a check-up, they had asked me if
I thought she knew me. I told them that she did but it was as if they thought
this was wishful thinking. I know that she knew her Mommy and Daddy to the end.
How could the doctors possibly know her by seeing her for 10 minutes? They will
never know how ‘tuned in’ to your child you have to be to look after them.
It’s something that you can’t explain; when your child can’t cry, smile or
move at all you have to notice the slightest change to know what they want.
When Jaymie-Leigh was diagnosed with Krabbes I had said that her time in
hospital was over; her place was at home. I knew that I could look after her
better at home and that the doctors and nurses knew nothing about her condition
anyway. They admitted this on that very same night. It was the first time they
had shown us any respect, as we had to explain everything to them.
JayJay was transferred to the children’s ward at Wordsley Hospital, where once
again we had to explain her condition. We also explained our wishes and told
them that we didn’t want Jaymie-Leigh to suffer any longer and that we wanted
to take her home as soon as possible. They agreed but said that they would like
to stabilize her. She was on monitors over night and she was given antibiotics,
with our permission, via the NG tube. There was to be no intravenous drugs.
Apart from stopping breathing a couple of times she had a quiet night. Richard
and I stayed by her side. Becky and Nikki stayed with my Mom, as they all needed
From then on Jaymie was permanently on oxygen. The following day a different pediatrician
came. We told him the same as we had told the others and I asked if we could
take her home. He said that we could but that it would have to be arranged for
oxygen to be there for when we arrived and that it might possibly be the
following day, as it had to be arranged by our GP.
I said, “If you phone our GP I can guarantee that it will be there
today”. He phoned Dr Cartwright and within a few hours the oxygen had arrived.
The biggest wait was for an ambulance, as we couldn’t take her home in the car
due to the oxygen. The paramedics had to be persuaded to take us, as it was too
late to book an ambulance for transport home. We finally arrived home at about
Becky and Nikki were waiting to see their little sister as the last time they
had seen her she was being rushed off in an ambulance and they thought that she
had gone forever. We settled down, very nervously, to the evening. We decided to
sleep downstairs as she always seemed more settled in her big purple chair. Her
secretions were really quite bad so we had to use the suction machine as well as
trying to keep he oxygen mask on. Richard told me to go up to bed to get some
rest and that he would sleep later. I reluctantly agreed and although I didn’t
think I would sleep I did.
Tuesday wasn’t too bad. Jaymie was still very poorly but she wasn’t quite so
distressed. She had a temperature but she seemed to be glad to be back at home.
You could always tell. We had a visit from Hazel from the Children’s
Disability Team. She had been on a few occasions and was great to talk to. She
seemed to want to help but didn’t know how. It was the first time she held
JayJay. The nighttime was a bit scary but then I always think nighttimes are the
worst. Jaymie ended up sleeping in our bed with us. She used to love that and
could usually manage to make us know that that was where she wanted to be.
I had asked Dr Cartwright if he could arrange for a machine to monitor
JayJay’s breathing at night, as it was a concern when I went to bed because
obviously I couldn’t watch her. He had phoned Wordsley Hospital, Russells Hall
Hospital and Birmingham Children’s Hospital but had been told that none were
available. They were kept as priority for children at risk of cot death. I had
been so angry. Any child at risk should have been able to use them. Dr
Cartwright had told me of the problems he had had and had said that he and his
staff had discussed the situation and decided to buy one out of the surgery
funds. I was overwhelmed.
Wednesday was the weirdest day of all. Everything I did was strange looking
back. In the evening I decided to bath Jaymie-Leigh. She loved the water and
hadn’t been in since Saturday. Obviously I had washed her down but having the
oxygen on made it difficult. The mask wasn’t a problem but the oxygen cylinder
was. I had to time how long she could manage without the oxygen so that she
wouldn’t become distressed; I had about three minutes to wash her hair and
give her a quick wash. We managed it and she looked a lot better for it. The
curls were back in her hair and her skin was gorgeous as it always was. I lay
her in her chair and she looked like a picture. The high temperature she had had
before her bath had gone now. We watched TV for a while and went off to bed.
Jamie-Leigh looked so comfortable in her cot. The only sound I could hear was
the oxygen, which was unusual because I could usually hear her breathing. I went
off to sleep.
At around 4.00am I
woke up. I looked over at my little girl and she was sound asleep. I wanted to
take her out of the cot and give her some love, to cuddle her. It was something
I never did, if she was comfortable I wouldn’t disturb her. I couldn’t stop
looking at her and I really felt the need to hold her. I sat on the edge of the
bed (JayJay’s cot was right next to me) and I decided to get her out. I lay
her next to me in our bed and just stroked her hair and kept kissing her cheek
gently. After about an hour she started to get a bit throaty so I sat up and lay
her across my chest, this would usually work but the secretions got a bit worse.
Richard woke up and asked if she was alright. I said that I thought she might
need a bit of suction so he passed me the machine. As I did the suction she
looked up at me; her pupils were large. This was how it had begun on the Sunday
before. I looked at Richard, who was now beside us, and I started to cry. “I
think this is it,” I said. I stopped the suction and she took a big breath in.
I was so scared I started to sob, “She’s going”. “Let her go,” Richard
cried. At that she took another deep breath and breathed out; she’d gone…
It was the hardest thing I have ever had to do in my life, but I know it was the
right thing to do. I think she waited for that moment; she died in her Mommy’s
arms with her Daddy beside her.
We phoned Dr
Cartwright. He came very quickly, although our families were already arriving. I
had taken Jaymie-Leigh’s tube out. She looked so beautiful, like a little
angel. The doctor listened for her heart for a while and then he said,
“She’s at peace now. She’s so beautiful, her skin remained so perfect
throughout”. JayJay had kept her weight and although she had been poorly for
such a long time she grew as any other child her age would. We woke the children
and told them. We took JayJay upstairs to them, as we didn’t think it was fair
to tell them in front of everyone. We all went downstairs to join everyone else
and everyone said his or her goodbyes. I took her back upstairs where I dressed
her in her pretty dress and said my goodbyes.
Her funeral was difficult, but so many people came and sent cards and flowers. It was overwhelming. Her physiotherapist, the community nurse, the disability team worker and the Acorn’s sibling worker all came. Even the girls’ head teacher came. There were people there we didn’t even know.
It’s very difficult to live life without her but Becky and Nikki keep us going. It’s difficult to know what to do each day when you’ve cared for your child twenty-four hours a day. I feel very lost and cheated. The only consolation I have is that my little girl is no longer suffering. I hope that she’s playing and laughing just as she should be.
with Dr Cartwright and Mrs. Grosvenor, the school head teacher, I am setting up
a fund in memory of Jaymie-Leigh. The money will be used to improve information
and to purchase equipment for children with chronic disorders and terminal
illnesses in the Dudley borough where we live. As I have described, we had
tremendous difficulty trying to get medical equipment that we desperately
needed, items such as the suction machine and the breathing monitor. So we will
be trying to set up a base where equipment purchased can be kept and accessed
easily by any doctor in the borough. Hopefully children in the future will not
have to wait to be comfortable, especially when their lives are short and time
Before I finish there are
some people who Richard and I would like to thank. People who played a big part
in our little girl’s life;
First of all to Dr Cartwright, who is still helping
us through this very hard time; he was always there to offer advice and support
in the care of Jaymie-Leigh.
To Hazel Haycock from the Children’s Disability
Team, who always tried to offer support; special thanks for helping us on the
day we lost JayJay.
To Sian Thorne, the community nurse who was always
willing to help if we needed advice.
To Helen Schubert, Jaymie-Leigh’s physiotherapist.
To Maggie, our health visitor who is still visiting
us and offering support.
To Liz Perham from Acorn’s Children’s Hospice
who was there for us to talk to. Also to Jill Arens, the sibling worker from
Acorn’s who talked to the children about any problems they were having.
Thank you to Beryl Holmes, the Genetics Nurse from
Birmingham Children’s Hospital, who was always willing to help and guide us
whenever she could.
To Mrs. Grosvenor, the school head teacher, for
supporting Becky and Nikki and her ongoing involvement in setting up the fund.
There were others who
were briefly involved in Jaymie’s care; we would like to thank each and every
one of them.
I am sorry to say
that there was a certain doctor (Dr S) who we feel wasted a lot of our precious
time with Jaymie-Leigh through not referring her to the Children’s Hospital
sooner. His communication skills were very poor and when dealing with parents of
children with any form of illness or disability a certain amount of compassion
is needed. He had none. We explained to him that Jaymie-Leigh was healthy and
developing normally and he did not listen. You can never be too protective as a
parent and at the end of the day you know your child better than anyone. If he
had only admitted that he was out of his depth and referred her to someone who
could find a diagnosis she wouldn’t have spent so much time in hospitals.
We will never forget our beautiful little girl. She was very special and we miss her so much. Becky and Nikki keep us going but there is a big empty space in our lives. Nothing and no one could ever fill that space but we know we have to learn to live with it. It’s hard but we’re trying!
A poem for our little girl,
miss you so much now you are gone,
we’re happy for you our little one,
you no longer suffer, you’re no longer in pain,
can laugh and play again.
we cry our tears, but not for you,
we know to let go was the right thing to do.
never forget your beautiful face
now we know you’re in a better place.
think of you each night and each day,
never forget you
Love you always.
You can email Jaymie-Leigh’s parents at email@example.com
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