‘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. We were told we had a one in sixty-four chance that our baby would have Downs Syndrome; 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.”… 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 confirmed that our baby’s four separate chambers had not formed in the usual pattern…She booked us an appointment for the next day. She also confirmed the wonderful news that our baby was a boy.
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. 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.
I had to spend a month in hospital before our baby was born. 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. 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.
…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…the bronchi which lead from the trachea to the lungs were collapsing each time he tried to breathe.
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….
Read the rest of the story at Under the Rainbow…