Lynda Robinson--Connors' Story (2)

Mystery 

The following day I couldn’t wait to see my baby boy but it wasn’t good news as I stood there watching the monitors, beeping of the alarms, and the needles and tubes that were in my wee man’s hand? The good news was that he was breathing his own air. I dreaded going to SCBU as there seemed to be something else that was going wrong with my precious baby boy. The consultant that was dealing with Connor had come to tell me that he had a heart murmur but that hopefully it was just because he was premature and that it would resolve its self. As the days passed he was not getting any better. He had a large liver, kidney and spleen. He was being fed by a NG tube, and he would no sooner be fed when he would vomit. Dr’s weren’t sure what was going on with him and many tests were carried out. He was low on potassium and needed a supplement. He wasn’t making any improvement and on many occasions he gave everyone a fright. As I walked into SCBU the nurse that had been looking after Connor came to give me the usual update. Looking at his chart there seemed to be a lot written. The nurse had told me that through the night Connor had stopped breathing many times and that he was having sleep apnoea. They couldn’t say for sure what was going on but had noticed that his liver was measuring 6cms when it shouldn’t have measured anything at all and that they wanted to do a liver biopsy. I was devastated and all sorts of thoughts were going through my mind, was he going to die? He certainly had all the Dr’s baffled and for three weeks after all negative tests results had returned. I said to his consultant that I wanted my baby boy to be moved to Children’s Yorkhill Hospital in Glasgow.

 It was arranged for us both to go to Yorkhill the next day. We were there for a week during which scans and x rays were carried out on his liver, heart and kidney. His heart had two holes in it and his pulmonary valve was thick. His liver and left kidney was still enlarged.  He had a visit from one of the leading geneticists Dr Stevenson. He and his colleagues examined Connor closely but he didn’t talk to me and I could feel myself becoming really anxious, I wanted so much to know what was going on with my baby. The next day as I was preparing to get ready for the move back to our local maternity hospital, a young Dr came to have a chat with me. She started to tell me about what they had found, my stomach was doing somersaults and then I heard Noonan Syndrome and that it was the next one to Down syndrome. I had never heard of it. She began by telling me that he has all the clinical signs which consist of low set ears, rotated ear lobes, eyes too far apart, wide spaced nipples, a concave breastbone, heart problem, eating problem, large liver and kidney. As she spoke I wanted so much to cry and I had so many questions but couldn’t find the words to say. I couldn’t take it in and oh! How I needed my Mum right now.

Being with Connor had been good after all he only had me to support him. His dad didn’t want to know and to be honest he wouldn’t have been any support to me. My emotions were all over the place and I was missing my 1^st born miracle Lee. I couldn’t even be with him on his 2^nd birthday and it was tearing me apart. There wasn’t any clear date of when I was getting my baby home for good so for now I would just have to be patient. I have learned to be more patient over time.

 We arrived back at our local hospital and Connor was settled back into SCBU. I had been discharged so I went to stay with my parents as they were looking after Lee. Oh! I had missed him so much and I needed to bridge the bond that I felt had been split. I visited Connor every day to take over his care for the next few weeks. He was still being fed by a NG tube and one day when I walked in I was asked did I want to take my baby boy home but in order to do so I had to learn to replace his tube. I was told to take him home, love him as they were not expecting him to see his first birthday. 

Going Home

I learned to replace his NG tube which I grew to hate and stayed in the family room to take over his care full time. While I was there an eye specialist came to see Connor. He did explain what he would be doing to his eyes and gave me the option to leave the room or stay, I chose to stay. He proceeded to place a clamp on my baby’s eye, it wasn’t nice to watch or hear as my wee lamb was screaming. Dr G was checking for bleeds as Connor had blown blood vessels in both eyes and they didn’t look like they were getting any better. The tests were over and he was given the all clear to go home. I was excited at the prospect of being home and being Mum to both miracles, but for now I had to stay another night and after all he had been there for seven weeks and they wanted to make sure I could cope.

Connors Journey

Mum and Dad invited the three of us to stay with them until I got on my feet and because it was just a few weeks until Christmas, they didn’t want me to be on my own.  My baby boy was losing weight fast and was projectile vomiting after every feed. He slept through feeds and I was getting really worried. Then one day as I looked at his legs, from the knee down to his toes were a very deep purple, by luck we had an appointment with his Paediatric consultant later that day. I was told that he would need a cauterization done to see what was going on with his heart, news that I wasn’t prepared for.  It was scheduled for the following week at Yorkhill hospital. The day of his surgery came and all sorts of thoughts were going through my head. As I carried him into the Operating Theatre and kissed him before putting his life in the surgeon’s hands, my emotions were all over the place and I thought the worst. Little did I know that our journey had only begun?

  I waited anxiously for my wee miracle to return to the ward. The relief that I felt when I saw him being wheeled towards me down the corridor. Again he looked so helpless attached to wires and monitors. My baby had pulmonary valve stenosis an ASD and a VSD. He would need heart surgery before the age of 4. For now he would be monitored closely by the cardiologist, but his valve had been stretched to allow his heart to function better.

Connor’s first year was a difficult one. He didn’t meet any of his milestones on time and his immune system was so low that he seemed always to have an infection or virus. He was still being tube fed and wouldn’t tolerate solid food at all. He would gag at the thought of solids. Vomiting was a huge problem and he was still losing weight. He was diagnosed as failure to thrive but still no one knew why. 

Diagnosis

At 17mths Connor got a clinical diagnosis of NS. I wasn’t sure how I felt as I had watched my wee man go through some horrific tests, but now at least he had a name to his difficulties, maybe I could plan for our future. After all I had been blessed with two beautiful miracles and I knew that my life had been changed for ever. Raising my two special boys was difficult but I was up for the challenge. My emotions were flying high but every little achievement that my boys made let me see how blessed I was and that the hard work and sacrifice was well worth it. Our schedule was hectic as Connor seemed to have lots of different hospital and therapist appointments, not to mention visits from health visitors or nurses. I had never felt so isolated and I had thought the worst about whether my baby boy would be with us for long, I couldn’t stop worrying about what the future held for my boy but for now all I could do was take one day at a time and thank God for every precious moment that I spent with Connor.  Life with my boys was busy but I took things in my stride. There were times that I wanted to have a little bit of my life back and just as I thought it would happen Connor would be referred to another clinic. More appointments and time spent worrying about upcoming surgeries, not something that I was comfortable with but could not escape. For now I had to pray and hope that the surgery went well. His bowel was the first op, my poor baby was always constipated and it broke my heart to watch him squirming and screaming in pain when he needed to go. He was on Senna and Lactulose but they didn’t seem to work and Connor would only have a bm every three weeks so he was having an anal stretch done. 

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