joesstor

JOE'S STORY.

Joe was an unplanned baby and his conception was an accident. I was shocked to discover I was pregnant and very worried as to how we would manage as at the time my youngest child Alex was only 9 months old.  When I broke the news to my Husband he laughed and told me not to worry we would manage some how.

About ten weeks into the pregnancy on a routine appointment at the hospital with my daughter Alex disaster struck. As we approached the car to make our way home I suddenly felt as if I had wet myself and looked down to see blood running down my legs and filling my shoes. Luckily my Mum had accompanied me and she went for help. I was taken to a ward and assessed and scanned. The Baby had a strong Heart beat but there was a bleed sight and the doctors could not tell me what was going to happen. I was sent home to wait and see.

My emotions done a complete u turn and I new that I could not live with myself if I lost this pregnancy. For eight desperate weeks I bled not knowing from one day to the next what would happen. Eventually the bleeding stopped and I was given the all clear. At last we could start preparing for a new arrival. I was suddenly overcome with joy at the thought of being able to hold a new born Baby in my arms once again.

On 12th March 2002, one day before my due date, at about 3.00 am I woke up in pain. My labour had started and I was extremely excited. My other two children had both been nearly two weeks late so I was a bit surprised that this one was planning to arrive on time. I was in complete control and finally decided that we should go to the hospital at about 11.00 am. we were admitted to Labour ward at 11.15am and by 1.08pm after five minutes with the entinox and two pushes Joseph David Johnson made his entrance into the world. He weighed in at 6lb 11oz the smallest of the three. He was perfect and our nine months of worry and concern were finally over. We stayed at the hospital for six hours and then took Joe home to meet his family.

Ryan (our eldest child) was ecstatic to have a Baby Brother. He loves his sister Alex dearly but always wanted a little Brother to play with and share his trains with. Alex (who was 18 months old by then) did not know what to make of it all and thought that it was a new toy to play with. We went to bed that night exhausted, excited, thrilled, amazed and very, very happy.

It did not take long for us to settle into a routine. Joe was reasonably content and undemanding. Most of the time we didn't even know he was there and even though he was being breast fed he soon got into a pattern of feeding every 3 to 4 hours and some nights he would have a six hour stretch. By age 4 weeks his weight had gone up to 8lb and he became more alert. Ryan loved to sit on the sofa and give him cuddles and Alex was constantly kissing him and called him Bubba Joe.

On 17th April 2002 aged five weeks and one day Joe gave his first smile. It was not for Mummy or Daddy or for his little sister who smothered him in kisses. It was soley for his Big Brother Ryan. Ryan was thrilled and went off to school to tell his teacher and friends about Joe's first smile. Just after lunch at about 1.00pm Joe had a crying fit and became difficult to settle. he cried so hard that his nose was tinged blue and he was gasping to get his breath. I was a bit concerned so decided to wait half an hour and if there was know improvement take him to the Hospital. His hair was wet but he was not feverish or lethargic and 20 minutes later we were both asleep in the armchair.

My husband woke me at 2.30pm to see if I was going to take Joe to the clinic for his weekly weigh. I said I would as it would give me a chance to ask the health visitor about the earlier events. Joe was due a feed so I woke him and although he was alert he did not seem hungry and kept spitting the milk out and coughing. I picked Ryan up from school and went to the clinic. Joe weighed 8lb 4oz that day but the Health visitor said that his skin was rather mottled and he seemed to be breathing a little fast. She advised that we take him to the Hospital just to be on the safe side. I took Ryan home and phoned my Dad to take me to casualty so that my Husband who was recovering from a vasectomy two days before could stay home and look after the other children.

We arrived at the Hospital at about 4.45 pm and were assessed and shown to a waiting area. It was thought that Joe might have a mild chest infection but as he was sleeping peacefully and everything else seemed fine we were not a priority case. After about 10 minutes Joe woke up and started crying for food. We were taken to a cubicle so I could feed him but he quickly became very upset and his nose began to turn blue again and he started gasping. A nurse grabbed him from my arms and we were running down the hall way to the resuscitation room. Within a couple of minutes Joe was surrounded by about 8 doctors and nurses. Monitors were connected, tubes were put in his hands and arms, bloods were taken and things became frantic. I was asked loads of questions about the days events and no one could tell me what the problem was. They thought that he was either choking on vomit, had swallowed something or had an infection. I was asked to leave the cubicle while x-rays were taken and told to phone my husband and and ask him to come straight away.

I went back to Joe after the X-rays and everyone began to whisper. A consultant paediatrician had been called to assess Joe and by this time I was a total wreck and sat in the corner sobbing. The consultant looked me in the eye and told me that Joe was very, very sick. His condition was critical and I was asked to leave the cubicle because I would be in the way of the special equipment that they needed to set up. My legs buckled as I tried to stand up and I was carried to a room where my Husband joined me after a short while. The consultant came to see us and the news was bad.

Joe's Heart was hugely enlarged and the left hand side which pumps oxygenated blood around the body was not working. His brain was being starved of oxygen and his vital organs were shutting down. He was in a coma and they could not stabilise him. A team had been called from a specialist Heart hospital and were on their way. As soon as Joe was stable he would be transferred. We were left alone for a while and we made some phone calls and held each other and cried. Our precious son was fighting for his life and there was nothing that we his parents could do to help except hope and pray that he would pull through. When the consultant returned about 20 minutes later he told as that Joe's heart had stopped beating by itself and Heart massage was keeping him alive. Over the next twenty minutes the news kept changing. His heart started again and they were trying to get him stable, then it stopped again, then it started again and so on.

We talked alone for a while and then called the consultant and asked him to be completely honest with us about Joe's condition. By this time they had started Maximum Therapy whereby they throw everything they have got at Joe to try and keep him alive. He had been in a coma for some time and his Brain had been starved of oxygen for at least 30 minutes. He could not breathe for himself and Heart massage was keeping his heart beating. Despite this his oxygen levels had fallen to just 10%. At best Joe would have severe Brain damage and would almost certainly need and urgent Heart Transplant which would involve a very high risk surgery if a heart even became available. Things were as bad as they could get and the medical staff held out very little hope of any improvement.

It was then that we made the most difficult decision of our lives and asked the medical staff not to prolong Joe's suffering if there was nothing that could be done to help. We were taken to the cubicle where he was being treated and given some time with him. He just looked as though he was sleeping but the monitors showed that despite the massage his heart was barely beating and his body was lacking oxygen despite the ventilator. We told him how much we loved him and how we only wanted what was best for him. We told him of the future we wanted him to have and how much he would be missed by all his friends and family. We then asked for all the tubes and monitors to be disconnected and the Heart Massage to stop.

JOSEPH DAVID JOHNSON DIED IN HIS PARENTS ARMS AT 8.06PM ON 17TH APRIL 2002 AGED 5 WEEKS AND 1 DAY.

The following day we were issued with our sons death certificate and sat with the consultant who explained the cause of death following the results of all the tests that had been done. Joe had an Acute Viral Myocarditis and a Genetic Heart Disorder almost certainly Hypoplastic Left Heart . The Heart disorder remains unconfirmed as we declined the offer of a Post Morton Examination.

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