Macy was born on 7th November 2012 in Stoke Mandeville Hospital after a normal straightforward pregnancy. Her older sister Libby aged 7, and brother Sam aged 4 were so excited by the new addition to the family. Libby even chose her name (although her first choice of Flower Sparkle was turned down by the rest of the family!) and was extremely proud of her new little sister. Macy came home and for two weeks enjoyed being the finishing touch to the family. A normal, happy baby, and absolutely perfect.
It was noted at birth that Macy was slightly blue in colour, but on asking the hospital staff we were told that it was just a new born tinge. After two weeks, Macy was still a slightly grey colour and was sent back to Stoke by the Community Midwife. We were discharged home after 4 hours in A & E, after again being told she was normal. Two days later the midwife again was concerned about Macy’s colour and she had started to lose weight. This time, luckily we were seen by a Consultant with some cardiac training who performed a scan on Macy’s heart and discovered that she had a condition called Hypertrophic Cardiomyopathy, which means that the muscle around Macy’s heart was thickened and weak. We were immediately transferred via an emergency ambulance to The Royal Brompton Hospital.
The nightmare had begun.
It really was the most frightening thing that had ever happened to us. We went from being a normal family, excited over our beautiful baby daughter, to being in the most awful, vulnerable position of now having a very sick baby, and two other dependent children waiting for us and their sister at home.
We arrived at the Brompton at 6 am on Tuesday 20 November. By 8 am that morning we were given the worst possible news. Macy had by this time already been rescanned by the cardiologist who told us that Macy could not survive with her heart in the condition that it was in. Our beautiful baby was going to die. That was when the numbness started. We had up till now been your average family. We were so lucky with our two other beautiful children, both healthy and gorgeous. But now, not only was our baby girl extremely sick and going to die, but we were told that Macy’s condition was 95% likely to be genetic and hereditary. This meant that Libby and Sam may also have the deadly disease, and also potentially my three nephews and my sisters (Paul is an only child).
Macy shocked the staff at the Brompton. They could not believe that a baby that sick had survived childbirth and was, up until that point, leading a normal life. She deteriorated quickly though. By the Thursday of that week she went from being a well baby to a very poorly one. She was now ‘Nil by Mouth’ and on a machine to help her breathe. We were given a room at the hospital so were able to spend every bit of time possible with her. But that was also hard on our other two children who were not only missing their baby sister, but their mummy and daddy too.
Macy continued to deteriorate, and several times her heart stopped beating and she needed a lot of intervention to keep her stable. The following week, the Brompton team decided that they could try to operate on Macy’s poorly heart. The operation involved scraping away the thickened muscle around Macy’s right ventricle, which was by this point almost completely obstructed by the muscle tissue. We were told that Macy would die without this operation, but that they were really not sure if the op would help. We were given odds of 50/50 that she would even make it through theatre.
It was one of our hardest decisions. But we had to give our baby a chance. She looked so vulnerable and tiny. Weighing just 3 kilos. Completely dependent on the staff at the hospital. So we agreed. Macy was taken down to theatre for open heart surgery on 28th November aged just three weeks old.
Macy defied all the odds and made it through surgery. Due to swelling, her chest was not closed so she had a little dressing on her tiny chest, with a heart shape cut out, so that the doctors could keep an eye on what was happening inside her chest. She fought an extremely hard battle. Some days she progressed so much that she surprised everyone and we started to see a faint glimmer of hope that Macy would have a shot at a life. My goals for her changed during that time. At first I wanted Macy to have the best of everything. 100% health and happiness. I would have given her the world. But now, I just wanted a chance. She may not be able to run, and to play sport. She may be on medication for the rest of her life. She may need a heart transplant eventually. But we would deal with that. Please please, just a chance.
A bad day always followed a few good days. Then the bad days became more frequent. Macy was put on more and more drugs. The support reached maximum. There was nowhere else for it to go. Macy suffered three heart attacks and became weaker and weaker by the day. She was now too sick for a heart transplant, and had been turned down by Great Ormond Street due to her condition. Then came the hardest decision we have ever had to make and one that no parent should ever have to make.
Throughout our stay on PICU (Paediatric Intensive Care Unit) we were shown love and support. All the staff treated Macy with respect at all times and were a massive support to us. They became our family. We completely trusted all of them and so when on Thursday 20th December we were called in for a meeting, we already knew the outcome. We had reached the end of the road. Macy was now too sick for a heart transplant. Macy was too sick to continue and it would be cruel to try and put her through any more.
Macy had fought every day for three weeks. We had had hardly any physical contact with her during this time as her chest remained open. But that day, on Thursday 20th December, we got our final Macy cuddle. The nurses, Rebecca and Anya, dressed Macy in my favourite babygro. They wrapped her in Nanny and Gramp’s pink blanket and we were all able to cuddle her.
Macy died in Paul’s and my arms. It was extremely peaceful. The doctors kept her sedated and pain free, and reduced her life support. Her nanny and Gramps and both aunties, Sharon and Jo were there. Her Grandpa and Grandma looked after her brother and sister at home.
Macy died at 20.43 pm. She was 6 weeks and 1 day old.
Throughout this time, our facebook friends provided us with constant support. There were times when, especially at night, I was alone on PICU. Facebook was my saviour. With all the love and support we received we were able to keep everyone updated and share our worst nightmare.
Team Macy was created.
Macy’s funeral was a Service of Love. So many people braved the snow storm on January 18th 2013 to say goodbye to our beautiful baby. The service was conducted by Bernadette who made the tribute to our little girl perfect. Macy’s uncle Jeff, who was going to be her Godfather and her big sister Libby read beautiful poems for Macy.
Hundreds of balloons were released in Macy’s memory by Team Macy, all around the world, from various places in the UK, Florida, Dubai, Australia, Canada, California and Spain to name a few.
But Macy’s story does not end there. Macy was such a special baby and we refuse to let her life mean nothing. We will make sure that Macy’s name is remembered and we will raise money in her memory to continue the amazing work of the Royal Brompton Hospital in Chelsea – our nearest specialist heart and lung hospital.
Please visit our website again in the future to find out how you can help save this wonderful hospital and become part of Team Macy.
Thank you to the Community Midwives who took my worries seriously. Thank you to The Royal Brompton who tried their absolute hardest to give my baby a chance. Thank you to Bernadette French who made Macy’s Service of Love a wonderful tribute to our amazing little girl. Thank you to Team Macy, who gave us constant support and showered us with food parcels and looked after our other two children and our pets. Thank you to our families, who set up a rota to be with us at the hospital so we were never alone and who looked after Libby and Sam and made their lives normal.
Thank you to Macy.
Our beautiful, special gift.
Lent to us for far too short a time.
But will never be forgotten.
Missed every day.
Our Amazing Macy, Little Warrior Princess.
Whilst in hospital we were told that Macy’s condition was more than likely to be genetic. That meant that as well as having our lives turned upside down with a dying baby, our other 2 children Libby and Sam could potentially develop the same illness. They have both been tested and at this time their hearts have proved to be healthy, however they will have to be monitored throughout their lives to make sure that this does not change. This means that we will all continue to be under the care of The Royal Brompton for the rest of our lives. Genetic science is advancing through leaps and bounds and we are hopeful that one day they will discover why Macy was born with this congenital defect and be able to test to see if Libby and Sam carry that gene. It is so important to us that we continue to support the new Genetic Research Laboratory, the newest and one of the most advanced in the world, so they can continue their research into CHD. For the sake of our children. And for the other families that are fighting this illness everyday.
Team Macy. Fighting with every heartbeat.
Heart and lung expertise
The hospital has more than 1,600 staff, five operating theatres and four catheter laboratories. We have 295 beds, including 48 for surgery, 93 for respiratory patients, 48 for cardiology, 34 paediatric, 20 for intensive care
and 12 for paediatric intensive care.
We have an international reputation for the treatment of lung disease, the result of over 160 years experience. We are also a national and international leader in the treatment of heart conditions, with large research trials leading to significant developments in the area.
Our hospital is home to Europe’s largest centre for the treatment and management of cystic fibrosis and we see patients suffering from asthma and chronic lung conditions including chronic obstructive pulmonary disease (COPD) from across the country.
Our adult congenital heart disease unit was the first of its kind in Europe and remains the largest.
Our leadership in both these fields allows us to attract the best staff from across the world. Our consultants work and teach internationally and publish research papers that set national and international medical standards.
Should they need it, our patients are supported by our dedicated adult and paediatric intensive care units. The hospital has seven dedicated adult critical care consultants and one of the country’s largest academic research programmes in intensive care medicine. We are also one of the few hospitals in the country to have a professor of intensive care medicine.
We have invested significantly in the latest imaging technology, which enables us to diagnose patients without invasive procedures in many cases. We acquired the UK's first ever dedicated cardiac CT scanner in 2005, which means we can diagnose coronary disease at an earlier stage than ever before. We are the largest cardiac magnetic resonance centre in the world and over 50 per cent of the UK's cardiovascular magnetic resonance scanning (high-
Hi again Team Macy
I have had time to think about the future of my family. I am completely 100% sure that the money we raise through Team Macy can be of benefit to children throughout the world!
I intend to continue to raise money for PICU at the Brompton as a thank you for the outstanding care and love shown to us during Macy’s stay but I also want our money to go directly to The Brompton’s new research laboratory to fund research into genetic testing to find answers and hopefully a cure to our worlds biggest childhood killer, congenital heart defects.
Macy’s legacy will continue to fight the devastating illness that causes families like us to never have the future that we planned. CHD killed my beautiful little girl and we will continue with our campaign to help prevent other families from going through the same.
Go Team Macy x