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Jack David (9 Feb 2010 - 12 Mar 2010)

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I remember when we first told Charlotte (5) and Harry (3) they were going to have a baby brother or sister. 

We had waited until after we had the nuchal translucency scan before we broke the good news to them. The results had been very encouraging and I remember the odds were good enough for us not to worry any more about possible complications. The letter from the consultant mentioned the odds of Edwards Syndrome and I recall saying to John that I had never heard of it. Our 20 week scan was on John’s 40th Birthday and as we sat outside the scan room we read the information boards on the wall and I remember thinking how terrible it must be to be given bad news, never imagining it could happen to us.  The scan took much longer than we had experienced before and we knew something was wrong before the sonographer said anything as she was looking at the same things over and over again.  We held hands tighter and feared what she was going to say.  Eventually the sonographer slowly explained to us that the baby had a clubfoot, that the chambers of the heart did not appear to be formed properly and there were cysts on the brain.

The consultant told us that each abnormality in isolation was not particularly rare or necessarily a major cause for concern but a baby having all three may indicate a chromosomal disorder An appointment was made with a specialist consultant in Sheffield’s maternity hospital. When the consultant scanned our baby it became obvious that there was no mistake. We were given the option of an amniocentesis and decided immediately that this was what we wanted.  We needed to know. By now the possible conditions had been mentioned and we started to look them up on the internet.  We found the information on Edwards Syndrome and as we read down the list of characteristics I began to fear the worst.

We stayed by the phone the whole of the next day waiting for our results. When the call came John answered the phone and I could see from the look on his face that the news wasn’t what we hoped. John had been told that our baby had full Edwards' syndrome which was ‘incompatible with life’. Our world fell apart.  That evening is a bit of a blur. I remember we called our parents and gave them the news then just sat in shock at what was happening to us and at the decisions we now had to make.  We had so many questions that needed answering and there was nobody who could give us the answers.  Would he suffer if he survived?  Was it cruel to continue with the pregnancy?  As the baby kicked I felt a mixture of happiness that he was strong enough to do so and sadness that he wasn’t aware of what his future held.

Back at the Sheffield maternity hospital the next day we were given the options available to us.  They confirmed that he was little boy and we decided to call him Jack David. Although we were never persuaded one way or the other and the decision was totally ours we were both given the impression that a termination was the expected outcome.  I couldn’t face it. We decided to let nature take its course and hoped that he would be strong enough to make it to term and maybe even stay with us while.

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I was concerned that our decision was going to have a huge impact on the rest of the family too.  How would Charlotte and Harry cope with losing a younger brother that they had got to know and even love?  How would grandparents deal with the loss of a grandson that they had bonded with?  Luckily our family gave us total support in our decision and we had time to prepare the children for what would eventually happen. We told them that he was very poorly and probably wouldn’t be with us for very long.  Children are amazing.  They understood and accepted what was happening and even tried to cheer us up when we were feeling down.  When we were feeling like the unluckiest people in the world, they made us realise that this was far from true.

Making plans for Jack’s arrival was difficult.  It’s hard to prepare for the birth of a baby that you know may never come home.  If he did make it and we were lucky enough to bring him home we didn’t know what care he would need.  Luckily we met with Jack’s paediatrician and Helen the community children’s nurse and they reassured us that we would get all the support we needed to look after him at home if that was our wish.

I eventually went into labour 2 days after my due date I was terrified of what was to come.  Would he be born alive and could he survive on his own?  Jack was born quite soon after we arrived at the hospital (at 9.15pm on 9th February 2010) and I was completely overwhelmed by how beautiful he was.  He looked perfect to us and for an hour we were left alone with him.  It was so peaceful and calm, nothing like I had expected.  Eventually the paediatrician came to take him to Special Care Baby Unit (SCBU) where he was put in an incubator on a drip and his condition was monitored.  When I was taken to see him he looked so different, so small and fragile. The priest was there already to baptise him which really brought it home.  Although we knew he was very poorly we didn’t want to believe that this baby who looked like any other new baby, all be it small, was really going to be taken away from us.  Soon after, the children arrived in their pyjamas to see their new brother.  Bleary eyed at being woken in the middle of the night they came clutching cards they had made for him and his first teddy bear. We somehow managed to leave him and go to a guest room to get some rest. Before leaving they gave us a couple of pictures of him laid in his incubator which we stood at the side of the bed. 

Very early the next morning we went to see him and were told that he was doing well.  They had reduced his oxygen and his stats were good.  He certainly didn’t look like he was in any distress and by 11.00 that morning he had been taken out of the incubator into a crib.  With the help of the nurses I washed and dressed him and we could even give him a cuddle, it was more than we could have ever hoped for. The doctor came to see us on her rounds and told us the scan they had done of his heart that morning confirmed that there was what appeared to be a large hole.  They were also concerned about his massive hernia and the complications that that could cause. Charlotte and Harry came to see him again after school.  Charlotte (now 6) read him a book and Harry (now 4) who was a bit more cautious gave him a little kiss.  It was a beautiful but heartbreaking time. That night at 9.15 John and I celebrated that he was now officially 1 day old!!

The next morning he was taken off the drip as he was taking all of his food via a nasal gastric tube. The SCBU nurse suggested we try him with a bottle and to our delight he managed to take a little by mouth.  Later that day Charlotte fed him and he took his whole feed by bottle, we thought he was invincible! Afterwards we took Jack for a walk around the hospital in SCBU’s huge silver cross pram.  We felt so proud but our hearts were heavy.  The SCBU nurses and doctors were fabulous, they were happy to look after us all but we were also keen to look after Jack ourselves. We were staying in the SCBU family room and that night we were allowed to have his crib with us, our first night with him at the side of our bed, it seemed as though everything was going well and it was almost like having a ‘normal’ baby.  Then as he lay in his crib beside us we heard a cry as he had pulled his tube out of his nose. We panicked but the nurse said it was ok and as he took his next feed by bottle they left it out.

Jack’s blood tests had shown that he was jaundiced so the next day he was put on a special bed in order to bring his bilirubin levels down.  It was like a little sun bed and he loved it.  Later that day we were given news that he was ok to go home!  As scary as it was to take him away from all the support of the medical staff, we wanted to be home with him.  John’s mum brought the car seat to the hospital as we hadn’t dared bring it with us for his birth and we were so proud to walk him out of the hospital and home to all the waiting family.  On arrival home we had to quickly prepare a bed for him to sleep in as everything had been left in the boxes. Jack’s stay at home was short lived as the midwife’s blood sample taken the next morning showed his bilirubin levels had increased further and he would need to go back into hospital to go back in an incubator. This time he was admitted to the Children’s ward in Chesterfield and John and I spent the night on a single bed by his side.  Again the staff here were wonderful and they asked us if we wanted to go home but neither of us wanted to leave him.      

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The next morning when we took him out of the incubator for his feed, he looked really poorly.  He didn’t want his feed and as John held him we noticed he was turning blue and realised he had stopped breathing.  I ran to get a doctor and they quickly put him on oxygen and transferred him to the High Dependency Unit. The apnoea continued for the rest of the day and each time he stopped breathing we thought he was leaving us.  It was emotional torture to watch him going through it with nothing anyone could do for him. We couldn’t believe that he was still with us by late afternoon. 

After everyone had left he took a tube feed, and ‘Shell, the nurse who had looked after us all day, prepared him a bath. We gave him his first bath and he seemed to pick up a bit.  We decided to brave the short journey home as it had always been our hope that he would pass away at home rather than in hospital.  It was arranged for oxygen to be delivered to our house and somehow that night we managed to go to sleep with Jack in his crib beside us, expecting that he may not make it to the morning.  He had a surprisingly good night and although he was still having apnoea we were less panicky and more confident that he would make it.

On his one week birthday we again thought it was the end for Jack.  His colour had turned grey, his breathing was very shallow and his eyes were hazy.  Helen, our community nurse, happened to be on her visit and she was as convinced as we were that he didn’t have long to live.  Grandparents again all rushed to see him and we said our goodbyes.  He surprised us all though and pulled through.  He was certainly making his presence in our lives known. Another scan of his heart confirmed the large hole and we were told that although it was very unlikely to rectify itself, surgery could not be justified as it was more likely to be something else that would ultimately end his life.  Although it was never our intention for him to undergo surgery, we were always looking for some hope that his condition was not as severe as it could have been. Throughout the next week we tried to become a ‘normal’ family.  We took him out occasionally, although he wasn’t very impressed at being in his car seat or pram and cried most of the time. On the few occasions that we did make it to school Charlotte was so proud to show off her new little brother.        

As Jack was approaching 2 weeks old we noticed his breathing had become shallower and he was starting to look grey and tired.  He was becoming more dependent on the oxygen in order to keep his colour.  His weight gain was very slow and he was still well under his birth weight.  At night he was less settled and we became concerned that he was deteriorating.  At 17days we noticed his tummy was very swollen and he was constipated.  Helen recommended we take him into the children’s ward for his hernia to be checked as it was always a concern that the hernia could become strangled which would be very painful for him.  Once there, it was decided that we go to the Neonatal Surgical unit at Sheffield and an ambulance was arranged to transfer him, as frustratingly they would not let us take him by car.

The doctor on call decided that there was nothing that needed to be done urgently so he would be seen again in the morning. The Specialist came to see him on the morning rounds and said she would come back to us later.  It was evening before she came back and although she gave us the option of surgery to repair his hernia, the chance of him surviving the operation in his weak state weren’t good.  We decided to take him home, slightly comforted in the knowledge that his hernia wasn’t causing him any pain or immediate danger.  The next morning he looked terrible.  His stomach was swollen like a rugby ball and he was grey all over. We didn’t know what to do.  Taking him back to the hospital would be pointless unless we were prepared for him to undergo surgery and neither of us believed he was strong enough to survive it.  We felt completely helpless.  Thankfully later that day Jack sorted it himself, by filling nappy after nappy after nappy.  What a relief!

He had bounced back again.  But as the days went by he was getting visibly weaker and although he was taking all his feeds his weight gain was minimal.  I was desperate for him to put on weight and get stronger and when I discussed this with his paediatrician it was suggested that we gradually introduce higher calorie milk.  We stopped this after only five days as he was becoming really unsettled at night and we spent the next week wondering whether he would pull through this, as he had done before, but he never really did

On the afternoon of Thursday 11th March we had an appointment to register his birth. When we returned from the registry office John had to go back to work.  As I was left alone with Jack I became increasingly worried that all wasn’t well.  I had called John home from work so many times with false alarms that I didn’t want to do the same again.  Jack was very lethargic but was refusing to go to sleep.  I gave him a bath as this had picked him up in the past but there was no change this time.  I also noticed his hernia was particularly hard and swollen.  John came home and together we didn’t know what to do for him.  I cuddled him for an hour to see if he would sleep.  He had been really poorly so many times that we almost thought that waiting it out would bring him back round.  Eventually it became clear that something was seriously wrong and we called the nurse on call.  She arranged for us to go to Sheffield A&E and we called grandparents to look after Charlotte and Harry and set off as soon as we could.  It felt like we had done it so many times that it never occurred to us that this would be the last.

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Soon after arriving at A&E he was surrounded by doctors and nurses.  He looked so tiny and frail on the large hospital bed.  They quickly determined that he was dehydrated and they suspected he had an infection.  It was an x-ray that revealed a problem in his bowel and blood tests showed that he had become septic.  The consultant on call gently broke the news to us that there was nothing that they could do for him now and he would probably only be with us for a few more hours.  There is no way you can prepare yourself for news like this.  We had known it would happen but never really believed it.  We felt so helpless, all we could do for him now was cuddle him and let him know we were there. 

We wanted to take him home straight away but they suggested we stay there just in case he did start responding to the antibiotics they had given him.  Eventually they told us that this was unlikely and we should take him home if that was our wish.  It was the early hours of the morning and I cuddled him and chatted to him in the back seat while John drove home as fast as he could.  Sadly somewhere on that journey home Jack decided that enough was enough and peacefully passed away in my arms.  Back at home we held him between us through the night, not wanting to let go and dreading the time he would be taken away.  I was so afraid I would forget how it felt to hold him.

Jack had only been with us for 31 days but it was suddenly impossible to imagine how our lives would be without him.  How we would miss the funny faces he pulled, hearing his little cry and kissing his velvety soft cheek. The church was packed for Jack’s funeral.  John carried Jack’s coffin into the church and laid it down in front of us. John said a few words during the service about Jack’s life and the impact this little boy had on our lives.  We also wanted to publicly thank all those who had been there for us. Taking Jack to the cemetery was the hardest journey of our life. We had chosen a lovely location for our family graves but seeing the excavated hole like that is the most awful sight. We didn’t let go of him until it was time to lay him to rest. Letting him go was so cruel. We had visited him many times at the chapel of rest and knew exactly how beautiful he looked, that memory will stay with us forever. He has taken with him a couple of small cuddly toys, a card from Charlotte and Harry and one from John and I telling him how proud we are to be his mummy and daddy.

John made an oak cross for Jack’s grave as a temporary measure and I visit the cemetery most days to tend to his flowers. I feel so robbed that this is the only thing I can do for him. We were supported by our family, friends, medical staff and community nurses more than we ever thought possible. Jack touched so many people during his short life, some of which never even met him. We feel so lucky to have known him and to have spent that short time with him.  Jack will always be part of our family and we will treasure the memories we have.  He will never be forgotten and forever missed.

by John and Louise

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