Our Little Fighter.

“When you are pregnant the most commonly asked question is “what would you like, a boy or a girl?” Most would reply “ I don’t mind as long as our baby is healthy “ Your child’s wellbeing is priceless and the most precious thing in the world”.

I guess alarm bells should have started ringing during a routine scan at 32 weeks (I had regular scans due to high blood pressure) The sonographer mentioned our baby’s tummy was large and showing a gestation of 46 weeks instead of 32 , perhaps, we should have queried this, but we didn’t and just took his word for it. Apparently it was within normal limits.

Sebastian was born 5th December 2013 at 3.50pm, I was induced 2 weeks early due to my high blood pressure. After a concern with jaundice we were allowed to bring our son home, I wasn’t concerned about the jaundice as all of my other children had the same and it always cleared up.

Sebastian a few hours old
Sebastian a few hours old

It was now the 8th December so we had a mad rush to be ready for Christmas. Not an easy task as Seb was feeding every 2hrs.

How I got through Christmas Day Is beyond me, although I did have mum and dad help on Christmas Day as I was feeling awful.

It was during the Christmas holidays when we started to worry about Seb. He was projectile vomiting after every feed and his stomach was even more swollen and hard.

We booked an emergency appointment on 2nd January to see our GP. After the doctor examined Sebastian we were told to go straight to A&E. He phoned ahead to make sure they were prepared for our arrival. Later that evening An X-ray taken at Grimsby hospital gave us a diagnosis of multicystic Liver, he needed to be transferred to Leeds General Infirmary the next day as it was the nearest Liver unit for children.

Stephen went home to tell the rest of the family, Ashley 19, Bethney & Drew 17, Ellie-may, 12 Dominic 4 and Louis our nephew 15. Thank goodness. at the time, Ashley was still looking for an apprenticeship after finishing his HNC in Electrical Engineering so he was able to help with the school run. My parents were amazing too with cooking meals, Dad also helped with School run when Ashley couldn’t . Beth took on the role of being mum to Ellie-may and Dominic. To this day I’m forever grateful to them because they gave Stephen and I the opportunity to spend every minute of every day with Sebastian.

January 3rd

We arrived at Leeds late Friday Evening, we were greeted by a young Doctor and shown around the ward, we was lucky a parents room was available in the hospital so we could stay Close. Stephen and I decided to do shifts so one of us was with Seb at all times.

January 4th

Saturday morning we took Seb for an ultrasound, they took over 70 pictures of Seb’s Liver and organs. It was mid-afternoon when the consultant and medical students came to discuss the scan With us. We were told Seb had a 10cm tumour on his liver and required a biopsy to rule out cancer however they suggested we go home for the rest of the weekend in order to pack some bags for a lengthy stay. We had to return on the ward 10am Monday.

Sebastian with a feeding tube

The journey home was a quiet one, Tears were pouring from my eyes but I was silent. By the time we got home I had to dry my eyes so I could support and be brave for the rest of the family.

January 6th

We arrived Monday morning on the ward ready for Sebastian’s biopsy And MRI scan which was scheduled for Tuesday morning. We settled in and tried to get used to our surroundings but to be Honest it was utterly heart breaking seeing so many poorly children. The nurses were incredibly kind and supportive which helped.

Tuesday morning Sebastian needed to stop having feeds around 4am so we had to pacify him with water and his dummy until his biopsy. Unfortunately, this was delayed…we actually had to pacify Seb until 4pm.. that was a nightmare and a lot of walking up and down corridors to soothe him. Eventually Seb was called and taken by a nurse for his biopsy, all we could do was wait.

Seb was late and I was becoming anxious So I found a nurse and asked if everything was okay. The nurse rang down to the theatre to get more information and we were told he was on his way back. Apparently his breathing tube went too far down and he was full of air. (I think that’s correct) We had an absolutely dreadful night with him crying in pain.

Now we had to wait for the results. It was a long few days.

Stephen was in bed when a doctor gave me the fantastic news, “ Seb’s tumour was benign”, his tumour was called a Hepatic Mesenchymal Hamartoma .
I rang Stephen straight away, he came through to us with tears in his eyes giving Seb a kiss and hugging me.

A team of students and consultants came to see us the next day to give us a plan for Seb. He would require surgery soon but we could go home for the time being as long as his feeding remained stable.

Unfortunately, we had so many worries and concerns with his feeding we ended up back in a hospital A lot sooner and remained there until it was time for his surgery.

Sebastian’s swollen tummy

12th February Night Before Surgery

Consent form

Nothing could have prepared us for the conversation we had with the surgeon the night before.
All I heard was how our baby could die tomorrow, I just couldn’t get past that and broke down in tears I had a complete meltdown. I just wanted to scoop Seb in my arms and run away.

The anaesthetist was next to visit. She managed to calm me slightly. Her words of “I will take good care of your baby” soothed my broken heart.

13th February Day of Surgery

8.15am and it was time for Seb to go to theatre, I felt sick, scared and emotional as we walked down the never ending corridors with Sebastian in our arms, thinking this could be the last time I see my baby alive.
On arrival We was greeted by the lovely anaesthetist, I always remember her warm and comforting smile, she looked relaxed and reassured us they would take good care of our baby boy.
We laid Sebastian on the bed and was told to kiss our son goodbye, in that very moment I felt like a heavy weight was crushing me into the ground, the walk back to our room was an unsteady one (hindered by my lack of Movement On my right side….. later I found out I had Parkinson’s Disease)

During surgery we told our family not to contact as the surgeon would be ringing us and I didn’t want a heart attack every time my phone rang thinking something had gone wrong.

I can’t tell you how we got through the day because as it was all a blur.

The surgeon rang us… his first words were “ He’s okay”

He went on to explain the tumour was so entangled in Seb’s liver they just cut it all out by removing a little over 50% of his liver. The next 24hrs were critical but we were allowed to see him.

As I walked in Seb saw me and one tear rolled down his cheek..it was heart breaking seeing him hooked up to all those tubes but at the same time I felt overwhelmed with happiness as my baby boy was alive.

For the first time since the 2nd January I had a feeling everything would be okay.

Sebastian now (with his brother, Dominic, Summer 2020)

Me and Seb

Sebastian amazed the medical team with the speed of his recovery and Unbelievably discharged him 17th February, only 4 days after major life saving surgery!

I can’t thank the medical team at Leed General Infirmary enough, I will be forever grateful to them for saving my baby boy.

He still has check ups at Leeds liver clinic…. but so far so good.

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