We were fortunate to have two healthy children and we wanted to have a third child. We prayed for the baby from the start and felt assured that God wanted this baby too as our prayers were answered immediately.
Concerns were first raised regarding the health of our baby from the twelve week routine scan. From the nuchal fold scan we were told we had a one in sixty-four chance that our baby would have Downs Syndrome; we were told that unless we had an amniocentesis test we would have to wait until the baby was born to know if he had. The next scan was at 21 weeks. I was lying on the bed and the sonographer said, “I would like to be able to tell you that I can see four distinct chambers in the heart but I cannot and so I will need to refer you to a consultant at another hospital to see whether this needs further investigation.” We lived in Eastbourne on the south coast of England and that night we had to drive an hour through rain to Hastings for a further scan. By this time I was convinced that our baby had Downs Syndrome as from the limited research I had done on the condition I had learnt that there can be a number of physical problems associated with Downs Syndrome and a common one was heart conditions.
The consultant at Hastings Hospital confirmed that our baby’s four separate chambers had not formed in the usual pattern. She was also concerned about what she had seen in the scan of the brain and wanted us to be referred to St Thomas’ Hospital in London for a further consultation. She booked us an appointment for the next day. She also confirmed the wonderful news that our baby was a boy. We were thrilled and we knew that Tom (6) and Ben (4) would be, too, to have a brother.
The next day we travelled to London. I can remember pleading with God during our train journey, “Please let it only be the heart,” but we were to find that there was more to deal with. The heart condition AVSD was confirmed, there was some uncertainty regarding his brain but also the consultant could find no clear stomach bubble. She was concerned that there was a gap in the middle of his oesophagus. With all of these possible complications an amniocentesis was discussed again in order for the doctors to gather as much information as possible about our child prior to delivery so that they could best treat him on arrival. Based on the results of this test we would have to make some decisions for our unborn child. We felt certain we would never elect to terminate. However, thinking about the baby and what he would have to go through, for a while termination did not seem such a black and white issue.
The test results confirmed that he seemed to have normal chromosomes however the physical concerns remained.
During this time I was greatly comforted by Hannah’s prayer of dedication of her unborn child. I offered our unborn baby to God as I knelt by my bed and felt him move. I asked that he would be dedicated to God and that in all his life and in this great uncertainty God’s will would be done.
Further scans revealed no evidence of a stomach bubble and as a result the stomach amniotic fluid was increasing as he had not been able to swallow it into his stomach. Our consultant was concerned that if this rate of increased fluid continued my body could not hold the baby and there was a greater risk of premature delivery. So at twenty nine weeks following my now weekly scans at St Thomas’ I had to have amniotic fluid drained off me. This procedure had to be done whilst the baby was being scanned to ensure that the needle that was entering did not harm the baby. It was a dramatic time as they took three and a half litres out of his home and I was reduced down in size considerably. As expected this procedure soon triggered early labour pains. I was kept in hospital for two nights. As the contractions occurred I prayed hard that God would hold our baby in place until the time was right, and He did.
I had to spend a month in hospital before our baby was born. This was not because I was unwell but just because of the excess fluid that, despite the considerable drainage procedure, very soon built up again. The excess fluid meant that there could be additional complications on delivery and being in London closer to expert care would save our baby from being blue lighted by ambulance up to London after delivery. Remaining in London would give him a better chance of doing well after delivery, which is naturally what we had always wanted. So I finished work and clocked in to hospital and the doctors breathed a sigh of relief. I missed my family tremendously but the day came when the Neonatal Intensive Care Unit had enough capacity to cope with us and so our baby was induced on Monday March the 22nd 2010.
He was born at 5.35pm that day. All nine pounds eight ounces of him was lovely and we named him Samuel Roderick. I first saw him properly at 11pm that night; being a baby destined for intensive care they did not delay in whisking him away, and your ability to get access to your child is not always uncomplicated. By the time I saw him that evening we knew a few more things about Samuel. He had, in addition to his AVSD, a cleft palate which we were told would require a further operation at 9 months, and the extent of his gap in his oesophagus was considered medium and so they thought that they may be able to operate very early on this. All parents think that their child looks beautiful. Well, we were no exception! He looked “perfect” but over the next five weeks we were to confirm that what we see on the outside is not always the complete story. It was a gradual process as we were drip fed more information about Samuel each day. Eventually the doctors gave him a label: he had Charge Syndrome. The word charge means:-
C – Choloboma – middle of the eye.
H – Heart – as we knew Samuel had AVSD. Multiple changes in dashes and spacing in chart
A – Atresia – the link to his stomach.
R – Retardation
G – Genitalia – can be smaller.
E – Ears – middle ear concerns.
Essentially CHARGE is retardation in growth that affects the middle part of these key areas listed that did not develop for Samuel. We had to rethink everything. We were now parents of a severely handicapped child and his future and ours was to be a series of operations and uncertainty. One of the series of meetings I faced was with the heart surgeon who said that Samuel’s heart would require an operation but not for a while and he could live for a few years without it.
It was dawning on us that despite the ever increasing list of disabilities Samuel had, all could be operated on and improvements made for a better future. I will never forget how my heart leapt for joy when talking to this surgeon. I started to believe that Samuel would be a part of our future. I believed that we had been given such a gift in Samuel! He was to have a hard life, that was for sure, but he was going to live – he was going to be a part of our lives, our family, our future. All my maternal instincts were ignited. We were going to have Samuel and work through whatever was necessary for him. I couldn’t stop smiling. I often look back to my reaction on that day and I find it a comfort as doubts creep in and tell me maybe God did not trust us with a disabled child. I think of the complete joy I experienced that day as I accepted that he would live and have a future on earth with us.
All changed when the doctors tried to remove his ventilation tube that had been used for his breathing during his operation for his oesophagus. After two failed attempts at extubation the doctors were puzzled as to why he was not able to breathe for himself as he had done successfully for the 48 hours prior to his operation. They had checked the breathing passage (the trachea) and it looked perfect. Then on the 22nd of April, when Samuel was one month old, an ear nose and throat consultant decided to go a bit further with his camera to see beyond the tube and around the corner into his lungs. What he found was the answer as to why Samuel would not breathe for himself. The bronchi which lead from the trachea to the lungs were collapsing each time he tried to breathe. The cartilage in the bronchi was not strong enough to hold them open.
I sat alone with the ENT consultant on a bench outside the parents’ room as he looked at me with a desperate look and said, “Anything we do would in my opinion be futile, absolutely futile.” Up until this point every doctor when faced with the list of Samuel’s problems (and we had seen many doctors) had an answer. There was an operation for his eyesight, one to assist with improving his hearing etc. No one had said that anything was impossible to treat but this doctor had said “futile” and we now knew the answer as to what God’s will was for Samuel’s life.
We had to say goodbye to Samuel in this life on Monday the 26th of April 2010. We were able to hold him and give him comfort (we hope) as he passed from this life into eternity. We love him so much and to part with him was so hard.
I still struggle with the verse “The LORD gave and the LORD has taken away; may the name of the LORD be praised” (Job 1 vs 21). I know it was God’s will to give us Samuel even though the gift was only for a short time. I also know that it was God’s will to take him. It is far better for Samuel the life that he now has, than what he would have had on earth BUT it does not stop us as parents dreaming of what it would have been like if he had lived, if he had become a part of our daily lives. In these struggles we are learning each day what it is to live life in God’s will and not our own.
Samuel has changed our lives in so many ways. He has become a part of our present and our future. We can never go back to live life how it was before Samuel was part of ours, and despite the pain we never would want to. We thank God for his precious life. We look forward to a day when we will all be reunited in heaven; on that day all of our present struggles will no longer matter.
When we visit Samuel’s grave, which is in a lovely cemetery at the foot of the South Downs, I always remind Tom and Ben that Samuel is not there. They have many thoughts about heaven but they still light up when they see his headstone and they give it a cuddle as it is something of their brother that they can hold. However, we know that as Christians we have a greater anchor to hold on to as is quoted on Samuel’s headstone, “Those who hope in the LORD will renew their strength.” (Isaiah 40 vs 31).