Freddie's Story
“I am sure it is nothing too serious…”
I remember those eight words from Freddie’s paediatrician like it was yesterday, even though I know he tried to hide it from me. The look of concern in his eyes confirmed what I knew deep in my soul, that it was something serious. He was just over two weeks old and we had spent that past week in The Coombe baby clinic having daily blood tests.
A mother’s instinct is a powerful thing, I suppose it is not something that I had ever given much thought to prior to the birth of my 2nd baby, the most beautiful baby boy with the most gorgeous head of blonde hair and biggest blue eyes. But he was not yet even 48 hours old when I knew that something did not feel quite right.
That warm fuzzy feeling of snuggling into your newborn at home getting to know each other was replaced when he was only 3 weeks old by the longest walk of my life down a corridor of St Joseph’s ward, in Children’s Health Ireland at Crumlin, past glass walled cubicles where tiny babies were hooked up to monitor’s or IV’s. Other parents looking up, giving you a gentle smile and a nod silently saying, we know.
Life as we knew it was about to change.
My heart was thumping, and I felt sick to the pit my stomach, putting one foot in front of another seemed liked an impossible task and it took every ounce of my being to stop those tears that were welled up in my eyes from flowing. Liver Disease and children, I didn’t even realise it was a possibility, but it didn’t take long for me to search online for any information I could find. Terrifying words like damaged, cirrhosis, life threatening, end-stage and transplant jumped out at me.
Following a number of tests and finally a liver biopsy, at 5 weeks old, Freddie was diagnosed with Biliary Atresia- it is a condition in newborn’s in which the bile ducts outside & inside the liver are scarred and blocked. Bile can’t flow into the intestine, so soon that bile builds up in the liver and damages it. The damage leads to scarring, loss of liver tissue & function, and cirrhosis.
Very early on, it was obvious that Freddie would need to be assessed for a Liver Transplant. He wasn’t clearing his jaundice, he developed portal hypertension and ascites – a condition in which fluid collects in spaces within the abdomen. He contracted cholangitis – an infection of the bile duct within days of returning home after his 1st liver surgery, which took place in Kings College Hospital London when he was 6 weeks old. King’s College Hospital is where all liver surgeries are carried out for Irish children. That put us back into hospital for another month. At only 3 months old, he had spent over 2 months in hospital.
What I wasn’t prepared for though, was how awful this horrible disease would ravage his tiny little body. He was so thin, vomiting up feed after feed due to his huge swollen belly which caused him so much discomfort. Hernias popped from under his scar. Taking his babygrow off in the morning and seeing the horror of his little body covered in scratches from the intense internal itching he experienced. The clumsiness towards the end when I knew his time was almost up…you feel utterly helpless.
Every time in the clinic or on the ward awaiting blood results, my mouth would be dry- skin clammy, ears ringing, heart pounding with adrenaline- wondering what today’s bloods, would mean? The expectation of bad news each time becomes a reality. The question of the mortality of your child plays over and over in your mind but you dare not utter it aloud.
A transplant is necessary at the end stage of liver disease when there is no other option available. The term “end stage” that creates such terror in your world means that the quality of life for your child is severely diminishing. It means that his organ is failing, he is on borrowed time, he no longer is capable of fighting this awful disease and he is solely dependent on a vast number of medicines to keep him alive.
At his very worst, Freddie was taking 13 medicines, 27 times a day to keep him alive. At his worst, he was being tube fed continuously 14 hours a day to try and keep his nutrition up, if we started to fail at that- a transplant could be off the table. Freddie astounded us so very early on with how resilient he was.
In April 2016, at 6 months old, Freddie was assessed for a liver transplant and was listed very shortly after. He was spending more time in hospital than out throughout that summer. He went through so many invasive procedures, transfusions, MRI scans, CT scans, x-rays.
He had become so unwell by September 2016, that the team decided that he needed to come into Crumlin for respite care. Freddie was barely sleeping by this stage, the disease had progressed so far. They could see the impact that it was having on our family. I was functioning on little to no sleep while my husband tried to hold the fort with our 2-year-old daughter. At this point I was being prepared to be Freddie’s donor and the team were equally concerned about my wellbeing.
However this set up didn’t work and we found it to be too exhausting back & forth to the hospital switching every day. Freddie’s team allowed him to be discharged as long as we could organise overnight nursing care.
This is where some of the amazing nurses from his ward St Josephs stepped up.
A number of them took it in turns to come to our home over the next 5 weeks to care for him overnight. They did this on their days off and it allowed me to get some rest to help my body prepare for our living donor surgery that was planned for the 20th November. I honestly will never forget their kindness.
Freddie deteriorated very rapidly the week that we were to fly to London for the transplant. We were so utterly terrified that he wouldn’t make it. We were due to fly on the morning of the 18th November. As fate would have it things were going to turn out very differently than what was planned.
In the very early hours of the 18th November 2016, I received a phone call to let me know that they had found a liver for Freddie. We were to be picked up in an ambulance and then would be flown to Heathrow. It was surreal, we were picked up at 4.20am and driven in the darkness to what seemed like a field in Dublin airport and soon we were on our way to Heathrow with the Irish Coast Guard helicopter.
Freddie received the gift of a liver late that night and we spent the next 9 weeks in London.
We returned home to Crumlin late January, but unfortunately things had not settled & Freddie was showing signs that his new liver wasn’t working as it should be. He was so unwell. He had a number of biopsies over the next week, numerous blood transfusions, and high dose IV steroid infusions to try and prevent rejection. To be honest, he was becoming unrecognisable as his little body was becoming so swollen from all the steroids and medication. But throughout it all, he was still smiling.
The decision was made to head back to London where he was put through numerous tests again to try and understand what was going on.
The ducts inside Freddie’s new liver showed signs of strictures & blockages, so his transplant surgeon confirmed that he was going to perform surgery on the transplanted liver. The surgery was biliary reconstruction and they hoped this would save the liver. However Freddie became seriously sick on the operating table, he went into septic shock when infected bile leaked from the blocked bile ducts.
I will never forget that next week in ICU, it will haunt me forever. Everything began to go wrong. He went into pre renal kidney failure. His face and body ballooned where he looked that he might actually burst as he couldn’t rid his body of toxins or fluids. They couldn’t get on top of temperature spikes, immunosuppressant medication levels were rocketing. I honestly believed we were losing him. And then just like that, on day 6 as Freddie always does, he came back to me! Freddie has always written his own rule book. It’s so astonishing to see your child so close to what felt like the end, open his huge blue eyes and just smile at you.
The reconstruction surgery didn’t work and Freddie was relisted for another transplant in June 2017. He wasn’t yet even 2 years old. My heart was broken for him.
We came back to Crumlin where everyone minded us both so well that summer. Freddie was not doing well, I was really struggling with my health after spending the best part of 10 months at that stage in hospital. Nursing staff would give me their dinner at night time if they realised I hadn’t eaten. Health care assistants would give up their lunch breaks to sit with Freddie so I could go and take a shower. Cups of tea would be dropped into our room with biscuits. The thoughtfulness that they showed us as a family was endless. My daughter was spoiled every time she came up to visit us. Poppy was only 20 months old when our journey through Children’s Health Ireland began.
The impact that the fractured family existence we lived for those years was immense on her young life. Effectively living as 2 parts of a whole family. Myself in hospital with Freddie and my husband parenting solo with our gorgeous daughter. It still haunts me to this day, and will never leave me, the look of sadness in her eyes when I would leave yet again to go into hospital with Freddie or worse to fly to London with no expectation when I might see her again. But she was so strong, courageous and brave. She never complained and showed nothing but love always for her baby brother.
Staff in Crumlin invest in you as a family. They treat you all not just the child whom is sick. And this is what keeps family going. We need that so much. The shower was my refuge in here, where I could cry without being seen or heard if things got too much. But invariably, the nursing team or the health care assistants would know those days and would wrap their arms around you just that little bit tighter. So many of them have truly kept me sane on some very long dark days.
In the early hours of the 27th September 2017, once again we got the call that a liver had been found for Freddie. As word filtered through the hospital so many nursing staff throughout the hospital came down to our ward to see us off. We flew from Baldonnell with the Irish AirCorp to Heathrow and landed at 5am. Freddie went into surgery that night and 10 hours later, he was back in ICU and I was clutching his little fingers.
This time the transplant was a success, 4 weeks later Freddie finally took his first steps & almost 8 weeks later we were back on home soil, just in time to celebrate our first Christmas at home together as a family. Freddie was 2 years 4 months old.
Freddie has continued to thrive, he has had a number of other conditions diagnosed in the meantime which is a most likely a consequence of the immunosuppressive medication he takes daily. Because of this, he is under a few teams in Crumlin who take a multi-disciplinary approach with his liver team when it is needed to ensure Freddie gets the best care.
But he takes it all in his stride. He loves his clinic visits to Crumlin where he is known by everyone..… He had a really tough winter last year with a number of inpatient stays but was treated like royalty and he lapped it up. Many staff have been with us on this journey since Freddie was 2 weeks old so they feel like our family. Every time I walk into the hospital, in a strange way, it feels like a home to us.
I call him my Mr Happy. Freddie is the very definition of living and loving life to the full. He wakes up smiling and goes to bed smiling. It is like deep down he really understands that life is for the taking, and that he is so blessed to live the life he does.
He is Liverpool FC and Leinster mad. He never stops kicking a ball or anything that might possibly resemble a ball around our house. But a football, my nerves weren’t able for the U7 rugby side-lines so a stop was put to that. Sorry Freddie. The compromise was soccer, and now his life seems to be “eat, sleep, football, repeat”. He tells me it will all be worthwhile when he is playing for Liverpool in the distant future.
He is the best brother to his older & younger sister. He takes his role as big brother to our wild youngest daughter very seriously. Freddie is our superhero- never did I believe that someone so young could be capable of such courage, positivity and strength. His sheer determination to face all he has thrown at him, leaves me in awe of him, every single day. We are so so proud of the person he is today.
We do not know what the future holds for Freddie but for now we cherish every single day Freddie has had since his transplants and will cherish every milestone that he will achieve in the future.
Every first for Freddie- his first step, his first word, his first day at school, his first love, and that first dance at his wedding one day has been and will be because of his 2 donors, their amazing families and Freddie’s incredible liver team of Dr Emer Fitzpatrick, Dr Annemarie Broderick, and his liver nurse specialists Amy, Laura & Sonja as well as the many, many staff in Children’s Health Ireland at Crumlin.
Without them all, our hearts, I don’t think could ever have recovered if Freddie didn’t make it. What we have personally experienced from Children’s Health Ireland at Crumlin, is something that we will never ever forget.
