On the 23 July 1998 our son Daniel was born by elected caesarean, during the
many scans my wife and I had attended it was noted that apart from lying crossways
in the womb and a slight umbilical hernia we assumed everything was o.k.
A slightly unusual situation arose, we knew when the baby was going to come
therefore we made plans. My brother and his family travelled up from the south
that day to attend a weekend of festivities. A new baby in our family is a very,
very big deal.
I had spent a great deal of time recently painting out the nursery secure in
the fact that 2nd time around I knew what I was doing and which end the bottle
went, whilst Heidi toddled around looking gorgeous in a round kind of way. I
remember thinking how much I loved her and how brave she had been through the
pregnancy as it had been an uncomfortable one and she had been sick for the
first 6 months.
Our eldest son Jordan was very excited as it was his decision to order this
baby in the first place and he was fit to burst. Later on that day when we dropped
him off at his Grandparents he broke the news to his Mum that if it was a girl
we should perhaps forget about it.
I drove Heidi to the hospital later that day, laughing and joking, life felt
good and we were happy and excited. At the hospital the Nurses prepared Heidi,
more laughter as we listened and monitored the baby's movements. Off to the
Delivery room and in walked the Consultant, he wanted to deliver the baby himself
as he had been with us all the way through and had treated Heidi with kid gloves.
We had lost 2 children through early stage miscarriage and he wanted to be there
when this baby was finally delivered. The atmosphere was a jovial one; we were
all upbeat and excited. I stood next to Heidi whilst the cesarean was carried
out, Daniel was delivered at 12.38 and the Consultants last comments were, "Heidi,
and Daryl here is your son. I hope for Heidi's sake I never see you in the ante
natal clinic again, especially after this pregnancy." he handed Daniel over
to us and smiled.
My first impressions were that Daniel looked unusual, and his cry was very weak,
like that of a lamb. I thought back to when our first son Jordan was born and
remembered that Jordan bore a remarkable resemblance to Winston Churchill. I
tried to put it out of my mind. Daniel's colour was bluish and the attending
paediatric team spent a great deal of time with him. We waited patiently but
were told he was having breathing difficulties and would need to be taken away.
This though they stressed was only precautionary. I squeezed Heidi's hand and
reassured her, she looked worried.
Just three of us
Heidi went into recovery, and was given her own private room as they do with
Caesarean Mothers. I made sure she was comfortable and went off to find Daniel.
Looking back the nurses did not say where he was but gave me directions instead.
I pressed the buzzer on the door and a voice on the intercom let me in.
I was directed to the first room, it was full of incubators and I looked for
my son. Over to my right were a cluster of Doctors and Nurses gathered over
a child, I remember thinking 'poor little soul'. I felt a hand on my shoulder
and turned, it was one of the team, a Doctor. He explained to me that the baby
I had been looking at was Daniel and he possibly only had 2 hours to live. That
he had a genetic disorder and the probability was he was Deaf, Blind, Crippled,
Brain-damaged, he had a heart condition and the likelihood was he would be unable
to feed.
I turned and looked at Daniel, his head was in a see-through oxygen box, my
heart broke, my mind spun. I wanted it to be a dream, people were talking I
could not hear them. I held Daniel and cried. The nurses took some pictures
and gave them to me. He was not expected to live much longer. How was I going
to tell Heidi, after all she's been through?
"Mr Davies, there is nothing you can do here". I felt so helpless, In a daze
I walked back to Heidi's room. The Nurses could not look at me. I sat down and
broke the news to Heidi. We both just wept uncontrollably.
We decided that if Daniel was not going to be with us for long then I should
be with him at the end. I left Heidi and rushed to what I now knew to be the
'Special Baby Care High Dependency Unit'. I spoke with the Doctors and they
said if he lasted longer than 4 hours they would need to X-RAY him. He was now
on a life support machine. People were avoiding my eyesight, what could they
say?
Mean while my brother was still travelling up from London oblivious to what
was going on. I rang him on his mobile, I remember the cheering down the phone
line when I told him it was a boy, followed by the deathly silence when I told
him that something was very wrong.
I cannot explain it to this day, but as I left the SCBU, I began to walk faster, as I approached the stairs to the maternity ward, I began to jog up them. By the time I reached the buzzer at the maternity door entrance, I was running. I was let in, but continued to run down the corridor. I was sprinting now, and I did not know why.
I ran past the nurses at the reception desk and straight into Heidi's room. Heidi was deathly white. She was not fully conscious. I rushed for the door and called the nurses. Heidi had suffered a massive delayed haemorrhage and lost a great deal of blood. Five minutes later and she would have died. The Doctors and nurses took over, and they had to use an operating room to give Heidi a massive blood transfusion.
I rang Heidi's Mother and before I could talk she put Jordan on the phone,
he was 6 and wanted to know when could he come and see Mummy and the new baby.
He was over the moon that it was a boy and said he wanted to keep him. I promised
him he would see the baby soon and then asked to speak to Grandma. Breaking
the news was one of the toughest things I have ever done but within minutes
Harold, Heidi's Father was at the hospital. It was a comforting feeling having
him at my side, calm and collected.
For part of the night I walked between the rooms of Heidi and baby Daniel, I
cannot remember what I was thinking. My brother had by now arrived and eventually
I went home, I felt that if I did not sleep then I would be no good to my family.
Heidi was now stable and out of immediate danger. Daniel lived on a knife-edge
for many hours but eventually came off the life support machine and things were
looking more hopeful.
Daniel in SBCU 1998
Blood was taken from Heidi and myself and sent away for analysis. We were asked
many questions about our family history's and in our minds we went back many
generations. Neither Heidi nor myself could think of any connection to Daniel's
condition.
While we waited for the results all sorts of things go through your mind, was
it something we did ? Could we have prevented this in any way ? Our results
came back quickly and were negative. Daniel was de-novo, which means the disorder
starts and ends with him.
We had found out that Daniel had a rare chromosomal disorder, so rare he was the only person in the world with it.
The disorder was on the 9th chromosome. He had a missing part on 1 side and an extra part on the other.
Daniel's medical condition is:
PARTIAL TRISOMY AND PARTIAL MONOSOMY OF THE SHORT ARM OF CHROMOSOME 9
Naturally I thought well that balances things up but the world of genetics is such an exact science that this was not the case.
The Doctors were baffled as they had never come across anything like this before; unfortunately we were given only their estimated state of Daniel's condition. At that point we did not realise that through no fault of their own, they did not really know what the future held and were guessing to a large degree.
When you are first faced with a situation such as this, of which nothing previously in your life can possibly prepare you for, you have to place total trust in the fantastic Doctors and Nurses of this country. The Staff of the Special Baby Care Unit at Billinge Hospital, Wigan, will always have our undying gratitude.
Daniel was also born with clenched fists, he could not open them and they were tight shut. On the 2nd day he was in SBCU a physiotherapist came to his cot, I watched her manipulating his fingers and massaging from the forearm. At that time I felt so useless I asked her if she could teach me and was there any limit to how often this could be done. From that day forward we worked on his hands and now 2 years down the line he has approximately 90% use of them.
I love to watch him play with his toys now, moving them from one hand to the other, it is a beautiful thing to see and another massive milestone in Daniel's development.
Daniel aged 22 months
Daniel was unable to feed from the bottle due to an excessively high arched pallet. The suck was made that much harder and very little purchase could be made on the teat. Secondly the suck/swallow co-ordination was not there yet, therefore he was fed oral-gastrically.
This involved passing a small tube down his throat and into his stomach cavity. We were trained to do this by the Nurses and at first this was quite daunting.
This was heavy stuff for non-medically trained parents and neither Heidi nor I slept much the previous night before our training.
In the early stages the tube can be left in, in order to avoid scratching the throat and irritating it.
Oral Gastric feeding can only be used for a period of time; the other options were Nasal gastric tubing or a gastrostomy.
A gastrostomy enables the food to be pumped into the stomach easily, weight can be maintained but after lengthy discussions between us, Heidi and I decided that Daniel had lost the use of so many of his senses we did not want to take away the sense of taste as well, therefore we looked at other options.
We tried this along with the help of one of his Nurses; he just could not manage it.
By using a small medicine cup with a specially rounded edge we were able to teach Daniel to drink from the cup in a lapping motion, this was mixed at first with tube feeding but we felt we had made a major step in allowing him to taste what he was eating.
For a child that we were told was probably blind, deaf and brain damaged this was a big deal to all of us. He seemed to enjoy the sensation and it was the first positive thing that had happened.
The feeding continued this way for a couple of weeks, Daniel was still in the Hospital and time was moving on. We felt though we were very happy with the care he was being given for all of our sakes we had to try and normalise the situation. The first step in doing that was getting Daniel home. We just both woke up one morning and looked at each other and said, we need him home now.
We spoke to the Nurses and the Doctor, at that time apart from at night we were doing all his cares for him anyway. We were trained to feed him and were quite competent and confident.
It was agreed he could go home, we watched a video on resuscitation we were not quite sure why but to be honest we would have sat through a 3 hour knitting video just to get him home.
Finally after 6 weeks Daniel came home.
Daniel was home for 3 days when he suffered his first apnoea attack, he was sitting on Daryl's lap being fed when he just stopped breathing, his colour changed and he went very pale. His eyes were blank and he was very floppy. It is a parent's nightmare; nothing can prepare you for this.
Finally Daryl gave him mouth to mouth and then we rushed him back to the SBCU.
Fortunately the Consultant Paediatrician was available and assessed him straight away. Daniel stayed in hospital for a further 10 days being assessed, as before he was fitted with an apnoea alarm, nothing major was reported
Daniel came home 10 days later, this time we insisted we have oxygen and a Sleep apnoea monitor to take home with us. We look back now and shudder, Daniel could have suffered an attack during his first spell at home in the night and we would have never known.
Daniel came home and lasted 7 days, during that time he had several attacks but we had the oxygen, soon the attacks began increasing so much we had to take him back but this time he was seen as being to old for SBCU we had to go to a general ward.
This was a bit of a culture shock, to be fair the Nurses had no previous experience of Daniel but we went to great lengths to explain his condition and problems. Daniel continued to have attack after attack and on one day this happened about 50 times. We felt he could not go on and eventually he would die.
A young Doctor came onto the ward that evening and looked at Daniel, he read his notes and said in a very relaxed manner, "I have seen this before it is called "Laryngo Malacia" He rolled a towel up and placed it under Daniel's neck, placing his head in the open air ways position. The attacks stopped.
The next day we were sent to Pendlebury Children's Hospital, Manchester, to see a Consultant E.N.T. Surgeon, Mr David Willett. He diagnosed a floppy epiglottic fold that was covering Daniel's airways. He said it would have to be trimmed to stop the attacks but little by little. Daniel under went several exploratory operations and 3 trims of his epiglottic fold in total.
Amazingly the attacks are very few and far between if at all now.
After these initial successes we were spurred on even further to look at what other information was available.
We felt we had to do something, we went onto the Internet and after days of searching found a Chromosome 9 web site at 3am in the morning, we left a message for help on the notice board and prayed that someone would get back to us. I remember thinking will anybody reply, it was very much like placing a message in a bottle.
Within a few days the miracle of the internet had happened, we received a reply.
Eventually we received a great deal of information from an unofficial genetic site via the internet and the Post from America. It was too much too soon. A very dark and hopeless picture was beginning to emerge. After speaking to Daniel's paediatric consultant things began to sound almost hopeless.
Unfortunately at first, when you have no medical background you associate all the different children's disabilities with your own child.
The key thing to remember, we kept telling ourselves was that we are looking at an exact condition.
Heidi and I began to research all information available on the internet on chromosome nine and then ultimately deletions on the 9th chromosome thanks to Annette Connah a very close family friend. It began to build up a picture. We had to always be aware though that this was only half of his condition.
Daryl and Daniel
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