Jaxon's story

I have had a terrible experience of fertility. I have had eight miscarriages and when I fell pregnant with my now 6-year-old daughter Lottie we had been told we would never have children. 

I completed the London Marathon in 2018 and then found out that I was 6 weeks pregnant with Lottie. 

Jaxon was different. We were not trying although we had always wanted Lottie to have a sibling. I had been told again on March 27th that another child would not happen for me. 

A surprise pregnancy

Me and my partner were due to go to Amsterdam in April. I had been sick with a kidney infection and I did not even put 2 and 2 together that I may be pregnant. We went to Amsterdam and I was so unwell and just put it down to travel. When I got back something inside told me to do a test. It was positive. Due to my history, I went to the Early Pregnancy Unit as I had pains. 

Early diagnosis

They confirmed that I was 11 weeks pregnant but we also found out that our baby had an omphalocele which means intestines or other abdominal organs are outside of the baby’s body because of a hole in the belly button area. 

We were referred to Harris Birthwright for further testing. 

We had all the tests under the sun including a needle right into the baby's placenta to look for genetic issues. As I waited for these to come back, my baby started kicking at 14 weeks. It was so strong and never kept still. I felt this was a fight, showing me they wanted to live. 

It’s a boy

All the test results came back negative and I was told the baby was a boy. I have always wanted to be a mama to a boy so to me, this was happening. 

We were advised we could terminate the pregnancy but that his issue could be fixed. Termination was not an option for me. I wanted to fight like my boy was fighting inside me. Lottie picked his name when we took her for a scan to tell her she was going to be a sister. To us our family was complete. 

Ultrasound scans

We were told Jaxon had a major exomphalos: his abdominal wall was not fully developed and he had his liver, stomach and bowel inside the umbilical cord. 

We went for scans every two weeks. Jaxon was growing with no other complications. We were warned his lungs looked slightly underdeveloped but that it was hard to tell on a scan. 

Suddenly we had to become Google experts to learn about his complications. Despite these, he showed a passion for living through constant movements and determination.

Jaxon’s birth

Although Jaxon was due to come into the world on the 7th of November via a planned C-section that fighting spirit that we would come to learn as “Jaxon’s terms” meant that on the 4th of November, he decided that he wanted to make an entrance.

When he first met us, all 6lb 3oz of a gorgeous Lottie lookalike with a huge mop of Daddy’s dark brown hair, we were in love. 

Our family was complete. Jaxon James Christopher Campbell Blessed this world with his life for three months and nine days. Words fail to describe Jaxon’s fierce passion for life. He thrived like few people ever do or ever will. No matter what he was going through, he soldiered on with such dignity and grace; giving the brightest smiles when he could and could tell volumes of stories with his beautiful big eyes. 

Being Jaxon’s Mummy

Jaxon spent 99 days in the Neonatal Intensive Care Unit (NICU). He fought like the bravest little lion in the pride despite being on a journey that no child or parent should have to take. Even on my and Dan’s hardest days in the neonatal unit, Jaxon still gave us the strength to carry on fighting with him. 

Anyone in the same room as Jaxon for one minute came to learn that he was a perfect baby. We were told every day how gorgeous he was, how thick his hair was and those eyes…

How I miss the mornings asking you how you were doing, how you were feeling and you looking back at me like “the crazy lady is back”. But he knew I was his mummy.

Jaxon’s NICU journey

Having a baby in the NICU is an intense experience. It’s a real rollercoaster and a step-by-step process with many forward and backward steps.

However, witnessing the determination of these babies to fight for each breath they take, is life-changing. All you can do is watch helplessly - something parents are not programmed to do. 

How we longed for late feeds, nappy changes and no sleep. 

Jaxon made friends and family for life in the NICU. 

He gained a mischievous reputation for pulling his tubes out. We had to use socks on his hands to try to stop him. Although he quickly learned that he could still grab even with those on. He was fighting through enough medication to sedate an elephant, to just kicking off, just because his nurse dared to check on another baby but he was fine, staring at them when they returned. 

Jaxon’s fight

Our cheeky little boy was well known and we would not have had him any other way. 

He loved his NICU family and would listen intently to his morning rounds. 

We had so many fun times with nurses looking after you. Auntie Beth making you Elton John glasses was just one that. 

Jaxon brought lots of smiles in very hard times. We held hands, we sang, we laughed, and we cried all together. We were willing miracles to happen and dreams to come true right up to the very end. 

Jaxon had an extraordinary spirit and genuine love for all around him especially his big sister Lottie. 

We thank you all for your endless love and devotion to us and our little boy. We are going to miss your hugs and words of encouragement. I miss the NICU and feel very lost since I returned home. 

We spent every day and night with Jaxon and Lottie visited on weekends. 

Jaxon had his first surgery on the 10th of January 2024 to widen the stork of his exomphalos so that his organs may slowly be compressed back in. This was a huge success, however, Jaxon's lungs were so underdeveloped that he started to go into Pulmonary hypoplasia and hypertension. 

Jaxon lost his battle on 9/2/2024.

Jaxon's wish

My mission is now in Jaxon's name to support the neonatal journeys of other parents and siblings in the NICU at Kings College Hospital. I want his memory to be eternal and to make purpose in my pain.

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