Macy’s Story
Macy was born on 7th November 2012 in Stoke Mandeville Hospital after a normal straightforward pregnancy.
Her older sister Libby, 7 chose her name (although her first choice was Flower Sparkle) and her brother Sam, 4 was so excited. She completed our family. Macy came home and for 2 weeks everything was perfect.
I noticed at birth that Macy's colour was slightly grey, but on asking the midwife was told she would 'pink-up' and not to worry it was just a new born tinge. After the 2 perfect weeks at home, I noticed that Macy became a bit greyer after a feed. She was thriving as normal at this point, but we were advised to take her back to the hospital she was born at. We were discharged after being told we were 'over anxious parents' and continued life at home.
Macy's weight started dropping, despite being a really good feeder and after another 'grey' episode that lasted a bit longer, we took her back to the hospital. Her oxygen levels were found to be very low, at first they told us it was just because she was cold, and tried to discharge us again. This time, after a bit of fuss from us, they agreed to run a few more tests. Macy had a heart scan and the room went quiet. We were told immediately that Macy had hypertrophic cardiomyopathy - a condition where the heart muscle becomes thickened and weak. We were immediately transferred to The Royal Brompton Hospital in London, our nearest specialist heart hospital.
The nightmare began
We suddenly went from being a normal family, excited by our beautiful daughter, to being in the most awful, vulnerable position of now having a very sick baby, and two other dependant children waiting for us and their sister at home.
We arrived at The Brompton at 6am and within 2 hours were told that Macy could not survive with her heart in the condition it was. We went from being a normal family with no health issues to being told our youngest daughter would die, and also the condition was 95% likely to be genetic and hereditary, and that our other beautiful children may also have the condition.
Macy shocked the staff at The Brompton. They could not believe a baby that was that sick would survive pregnancy, and childbirth and up until that point live at home normally. She was called 'a miracle'. But after a few days at the hospital she went from being a very well baby, to a very sick one. After suffering from a cardiac arrest, she was placed on breathing equipment. We were given a room at the hospital so were able to stay with her, but this was extremely hard on our other two children who were missing their baby sister and also their mummy and daddy.
Macy continued to deteriorate and several times her heart stopped beating and she needed a lot of intervention to keep her stable. But during this time, Macy kept fighting, showing us our amazingly strong she was. The team decided that as she was fighting with every heartbeat, they would fight for her and so agreed to offer surgery to hopefully improve her heart. The operation involved scraping away the thickened muscle around her right ventricle which was by this point almost completely obstructing by the muscle tissue. We were told Macy would die without the operation but she was also given odds of 50/50 that she would even get through theatre.
To date, this has been one of the hardest decisions we had to make.
Macy survived open heart surgery and defied all the odds. She was very swollen, so they left her chest open. It was covered with a little heart dressing that you could see through so her heart could be monitored. She fought an extremely hard battle. Some days were so positive and we were given hope she would have a shot at life. My goals for her changed over this time, at first wanting the best of everything for her, 100% health and happiness. I would have given her the world. But now all I wanted was a chance. She may not be able to run or play sport, she may be on medication for her whole life, she may need a heart transplant, but we would deal with all of that, just for a chance.
A bad day always followed a good one, the bad days became more frequent. More drugs, more tubes and equipment until everything was at maximum and there was nowhere else to go. Macy suffered three further heart attacks and became weaker and weaker, now too sick to be considered for a transplant.
During this time, the staff became like family to us. We trusted them completely, so when on Thursday 20th December we were called in for a meeting, we already knew the outcome. Macy was suffering and it was now too cruel to continue.
Macy fought every day and we had hardly any physical contact with her as her little chest remained open we could not hold her, but on that day we finally got our longed for Macy cuddle. They wrapped her in her favourite blanket and she died in our arms. She was just 6 weeks and 1 day old.
Throughout the time she was in hospital, we had so much support from friends and family and we set up a messaging system to keep everyone updated on her. Somebody told us Macy's Team was with us in spirit and to keep being strong.
Team Macy was created
Macy’s funeral was a Service of Love
At Macy's funeral, hundreds of pink balloons were released by 'Team Macy' all around the world in her memory, and this is the reason the pink balloon is so significant to us. I even have it tattooed on my skin!
Macy's story does not end there. She was such a special little baby and in her memory we have vowed to help others and keep her name remembered.
If you would like to be part of Team Macy, please contact us for advice on how to support us.
Macy's legacy will continue to fight the devastating illness that causes families like ours to never have the future they planned. CHD (Congenital Heart Defects) killed my beautiful daughter and we will continue with our campaign to help other families that may be going through similar.
