Parents: Sharon and Peter
Hometown: Brightlingsea, Essex, UK
Diagnosed after birth, lived for 2 days
Nicholas George’s Story
“I told my immediate family that I was pregnant when I was just 6 weeks or so, my brother seemed a bit shocked when I told him and I couldn’t figure out why. Two or three weeks later he told me his wife was expecting their first child and amazingly we were both due on the same day, he had just been shocked when I had told him as neither of us had any idea of the others intentions.”
Peter and Sharon had a beautiful three-year-old daughter Ella when they decided to try to add to their family. She got pregnant the first month of trying to conceive, as she also had with Ella. Things were proceeding down the same path, so they assumed this pregnancy would be as straight forward as the first. Ella referred to the baby as ‘peanut’ from day one.
Sharon was 31 and Peter was 30 so everyone assumed everything should be low risk and straightforward. The AFP test results showed a risk of 1 in 7,757 for any abnormality. The 12 week U/S looked fine, but at the 20 week U/S the sonographer got quiet for quite a while. She finally said the baby had some Choroid Plexus Cysts and she was just going to get them checked out. When she left the room Sharon started crying and Peter, who is usually always positive and looking on the good side of things also got very quiet. She returned a couple of minutes later and said that her consultant assured her this was routine and there was no problem. Sharon recalls, “I felt uneasy all that evening and the next morning I rang and asked for follow up tests; this was refused. I called three times in all but they refused me each time. I was even told I was neurotic at one point and when I mentioned Edwards Syndrome and the link with CPC they laughed at me.”
At first, Sharon looked very pregnant very quickly compared to her sister-in-law but then at about six months she didn’t get any bigger and Karen was getting enormous (as Sharon had with her first pregnancy). But even this did not worry her at the time. At about 36 weeks the midwife said she thought Nicholas seemed very small for dates so she arranged an additional scan. The sonographer said the baby looked to be about 8lb-9lb. Again, they went home and weren’t too concerned. But Sharon still had a nagging feeling that things weren’t quite right. “Deep down I had not been confident with this pregnancy. I just felt something was wrong. Looking back now I can link it to the time the cysts were found and I think inside me I just knew it wasn’t going to be a very good outcome.”
On Friday, December 13th she was overdue and was out shopping with Peter and her mom. She began to feel very ill, and went in to the hospital to be checked. During that time they discovered that Nicholas’ heartbeat was dropping from 153 beats per min to less than 60 beats. Although they kept her there, they were “busy” and wouldn’t induce her even though his heart had dropped four more times. On the following Monday morning they told her to go home, but she refused so reluctantly they induced her.
Nicholas immediately went into distress and they arranged an emergency c-section. They opened her up and the silence was deafening. “There was no baby crying and I heard a mans voice say ‘the baby has died’. I just lay there looking up at Peter and started shaking. Peter asked the doctor if this was normal as we were unsure as to what was happening but nobody answered him. After a few more minutes they rushed Nicholas past us into special care: he weighed 5lb. I asked Peter to go with him and check that he was ok. At the time neither of us dreamt anything was wrong, certainly nothing life threatening.”
Sharon was wheeled back into the delivery suite while Nicholas was in Special Care and Peter was going back and forth to spend time with both of them. A nurse then came to them later that afternoon and said they were quite sure Nicholas had something badly wrong with him. “I immediately said, ‘is it Edwards Syndrome?’ and she just looked at me, shocked that I would know something about this very rare syndrome. I explained that I had checked the internet when the cysts were found and had read up on it. I arranged for Nicholas to be christened the same night. The next three days are a bit of a haze really as I was very sore after the c-section and I was being drugged up with morphine constantly. I think this was also to numb the affect of what was happening rather than for the pain factor.”
“I can clearly remember the first night Peter and I were alone. I was just praying and praying that he had Down Syndrome and not Edwards which I knew was deemed ‘incompatible with life’. My parents came straight down and looked after my three-year-old daughter and spent all of Monday night at the hospital, so Nicholas had all his immediate family around him. Looking back now, without my parents we would have found it impossible to manage between looking after Ella and Nicholas and we will always be grateful for that.”
Sharon’s sister-in-law had given birth to their son Lewis also by emergency c-section the same day. Her brother made the trip to see Nicholas on Tuesday. “I am so grateful he got the chance to see him. I think it was one of the hardest things my brother has ever had to do.”
“The hospital ran some tests on Nicholas and sent them to London and we just had to wait for the results, although we all knew by then the outcome wasn’t going to be very good. I knew we wouldn’t have long together, but I would have liked to have just got him home for Christmas so we could all have spent the holidays as a family.”
On Wednesday the results came back and it was 100% confirmed that Nicholas had Edwards. The consultant suggested switching off the machine and just seeing what would happen. Peter and Sharon were quite happy to accept that life would be very different at home if they managed to get Nicholas home, but they all said they would manage somehow. Sharon’s mother had offered to give up work and between them they would have looked after Nicholas and given him the best quality of life they could. “Nicholas was taken off of the machine and all his leads were removed and we just sat cuddling him, waiting for him to stop breathing as we thought it would be pretty quickly. Nicholas fought on for five hours and had lots of cuddles and kisses from all our family. Ella changed his babygro and his nappy. The last hour of his life was the most awful thing I could ever imagine, every breath was a struggle for him but he just seemed to carry on. I had my hand on his heart and every time it stopped beating I looked at Peter but every time I moved he seemed to breathe again and it was just getting more and more painful and difficult for him. His heart stopped again about 7:50pm and I was too frightened to move, as I didn’t want him to start fighting for life again. He died at 8:00pm on Wednesday 18 December. Peter and I undressed him and changed his nappy. We had seen a programme on television about a couple whose baby had been stillborn and we found it strange when they spent time with the baby, but it seemed the most natural thing to do when we were in that situation. We put him in his ‘coming home’ outfit and then just cuddled him for a couple of hours before we asked them to take him away as his colour was changing quite quickly by that stage. Leaving the hospital the following morning was unbearably hard for both of us. The other dads were arriving with their baby carriers and we just walked out with carrier bags. It just seemed so unfair.”
“It was our wedding anniversary the day we left hospital and we spent the day registering the birth, then the death and then arranging the funeral. Nicholas had died one week before Christmas and I can remember feeling really angry when I saw everybody in the street, people I didn’t even know, carrying on as normal and rushing around looking forward to Christmas, as if they didn’t have a care in the world, when our son had just died. I just felt so hurt.”
“The weekend before Nicholas’ funeral I felt I had to go and see Nicholas in the chapel of rest, but I didn’t know what he would look like, as he had been dead a couple of weeks by this stage. In the end I did go to see him and he looked so peaceful, I am really glad that I went as I will always remember him looking so peaceful and I felt that I had had a final chance to say goodbye.”
“Nicholas was buried on Monday 30 December with just eight of us present, immediate family only. I wanted Somewhere over the rainbow to be played, although at the time we didn’t realise it was associated with Trisomy 18, but that has made it even more special to us. We had Nicholas cremated and we have buried him in the garden in a little pot with an angel holding a child placed on top. I do get comfort knowing he is there and I say good morning and good night to him every day.”
“I knew little about Edwards before but after reading other peoples stories and more facts, I feel really proud of Nicholas. He fought every day for his life for the nine months I was carrying him and although we only had two days with him, we both agree that we feel very proud to have had him as our son: he fought hard from day one and didn’t want to give up trying. We had the chance to spend time with Nicholas and all said our hellos and goodbyes; we only wish the outcome could have been different.”
“My pregnancy with Lucas with very different from Nicholas. I didn’t accept that I was actually going to be bringing a baby home until about one week before my section date. I just blocked it all out and carried on with normal day to day life. Many people have made comments to me about the fact I conceived four months after losing Nicholas. To me it was the right choice and despite many of the comments – I haven’t forgotten Nicholas and I never will. He will always be my eldest son and loved. Lucas has just put something extra special back into our lives and hopefully now we can start to move forwards. The journey with Lucas was very very hard (as I hadn’t had any testing for Edwards – just relying on scans) but it was a journey which, in our opinion, was well worth it”.