19th October 2010 – 9th January 2011
Obstructive Hypothrophic Cardiomyopathy (HCM)
Tuesday 19th October was the happiest day of my life. After five years of trying for a baby, and having IVF with ICSI we were blessed with Harry, a bundle of joy weighing in at 6lbs and 6 ounces.
From the minute he was born he was making strange grunting noises, which as first time parents we had no idea what they were – we just thought he was trying to tell us something – we weren’t wrong. Twelve hours later Harry was taken upstairs to the special care baby unit (SCBU) with poor feeding, hypoglycaemia and respiratory distress. An echo cardiogram was carried out on Harry the next day and we received the devastating news that he had severe Obstructive Hypertrophic Cardiomyopathy (HCM) – a condition that is incurable in newborns. Harry was given a poor prognosis from the start, but amazingly after two weeks we were allowed to bring our brave little boy home. He was the most amazing little boy I have ever met. His extraordinary big blue eyes were captivating and I was so proud of the life I had helped to create.
Harry had a huge amount of drugs to take everyday to try and manage his condition, but taking this never phased him. He would be examined by doctors on a weekly basis, bloods taken, his body scanned, but he remained brave throughout each appointment. He was our little soldier. When he began to smile his face just melted our hearts. We also found out that Harry was profoundly deaf, but this was a minor problem compared to his heart condition.
At this point we hadn’t told many people of Harry’s poor prognosis and I was desperately trying to find some miracle stories on the internet, but to no avail. The few stories I did find were sad ones, babies taken at six hours, four days, three months – none of these babies were surviving. Still, we lived in hope that Harry would be the exception, after all he had come this far.
We shared the most amazing family Christmas and new year with him, filled with love – he truly made our lives complete. On Bank Holiday Monday, just after New Years Day we decided to take Harry in to the hospital where he had been treated. He wasn’t feeding well. He was sweating and becoming increasingly fractious. He was having episodes where he would struggle for breath and turn purple with his eyes just staring at you, longing to take the pain away. As a mother, I instinctively knew that he didn’t have long, so we arranged a blessing with close family members. The nursing staff at the hospital made him comfortable and we spent as much time as we could holding him, stroking his hands and cheeks preparing to say goodbye.
Harry passed away five days later, peacefully in his daddy’s arms. He had mustered up all his energy to open his right eye to look at us and I smiled at him and told him not to be scared and that we loved him.
Harry was the most precious gift we have ever been given, and I don’t regret a moment of the heartache we have suffered. You see, at my twelve week scan we were told that there was something wrong with Harry as the nuchal fold measurement was 6mm which could indicate a chromosome abnormality. The doctor who saw us said ‘that Harry would not survive outside of the womb’. But we took the risk, we didn’t have an amnio, we did, however, have lots of scans which didn’t show anything. Would we have done anything differently? No is the answer – Harry was meant to be here, he was meant to make a massive impact on our lives. Of course, I and my husband now have to undergo genetic testing to see if Harry’s condition was inherited from one of us, and if it was an isolated heart condition, or part of a bigger chromosome abnormality such as Noonan’s Syndrome. We would never have knowingly given Harry anything, but to prevent any future children suffering it is vital to know if we carry the HCM gene.
I know that we will never get over losing Harry, he will be forever in our hearts and I do believe time truly does heal. I only have to look at my husband and I see Harry. We are not bitter about Harry being taken from us either – we are thankful for the time we did have with him and the time we had with him to say goodbye – something many people do not have the chance to do.
The following phrase sums up Harry’s short time with us.
‘Even the smallest of feet can leave the biggest impression.’
To view Harry’s Rembrance click on CHD Angels: A place of remembrance
Wrote by Lisa Redfearn
23rd February 2011
Lisa and Scott Redfearn have kindly given CHD-UK permission to use their photographs