13/2/14 The Worst & Best Day

One of the toughest moments of being a parent is not being able to take away your child’s discomfort when they are sick. If you could take away their pain you would but instead you give them as much comforting and cuddles as you can!

Sebastian was diagnosed with a 10cm Mesenchymal Hamartoma on his Liver at 4 weeks old, he needed life saving surgery which was on the 13th February 2014..

The evening before

We was on a ward with three other patients and their parents, I must say seeing so many seriously poorly children was extremely distressing and brought home the seriousness of Seb’s condition. When a doctor ever came to see you they would always close the curtains for privacy, however this obviously wasn’t sound proof and we still could hear each other’s conversations between the medical team and other parents. Let me tell you, It was terribly heartbreaking at times.

To this day I still find it difficult to talk about the conversation we had with Sebastian’s surgeon. My husband and I was not expecting the brutal reality of what could happen the following day.
I pretty much lost it the first time he told us Sebastian might not survive, death was a word being raised more often than not and in the end the only thing that I could mumble out was “have you had any success with these type of surgeries”? He replied “he had but his colleague was unsuccessful” I wasn’t sure how to take that, but it didn’t matter because by now I was distraught and shaking uncontrollably (unbeknown to me I was suffering with Parkinson’s symptoms) nothing about the surgery seemed positive and I just wanted to pick my baby up and run away with him. Of course the truth was I couldn’t because Sebastian needed surgery to survive, his mesenchymal hamartoma was growing bigger and bigger and putting extreme pressure on his lungs.

There are only 3 hospitals in UK that have children’s liver units

  • London King’s College Hospital Paediatric Liver Centre
  • Birmingham Children’s Hospital 
  • Leeds General Infirmary Children’s Liver Unit

We were in Leeds which is just over 2hr Journey from our home which wasn’t too bad considering some children and parents had come from Scotland.

Signing Consent Forms

I know the surgeon needed to give us the worst case scenario but the fact that Seb was only 10 weeks old was going against him, they prefer to wait until they are little older before doing surgery but this wasn’t an option for Seb.

Surgery would take most of the day or possibly longer (we would be updated if it was to go over). We now knew all the grim details of what could happen and now it was time to sign the consent forms basically agreeing and accepting the dangers that Sebastian may not survive.

That evening I just cried, I rang my dad and cried, I talked to several nurses during the evening and cried. I was looking for hope or someone to say Seb will be okay but of course no one could offer me that. Stephen went to bed early as usual so he could get up at 1am and let me get some sleep so I was just on my own with Seb.

The Day of the Operation

We were taken to theatre by a nurse, although we were allowed to carry Sebastian. As I walked down the never ending corridors I felt a huge sense of pressure on my head and shoulders, it felt like I was being squished into the ground, I have never passed out before but I wondered if that was the feeling you have just before. somehow I kept going. We arrived at the theatre and it was time to lay our baby down on the table , we were told to kiss him goodbye by the lovely anaesthetist and as we were leaving she said she would take good care of him. I felt comforted by her words and believed she would do just that. As I left the pressure on my head and shoulders increased even more and felt I might pass out but somehow I didn’t, I had the strength to keep walking until we go back to our room.

The night before we told our family not to contact us because the surgeon would be ringing us in any event so we didn’t want a nervous breakdown every time my phone went off.
The day was a blur, I can’t even remember how we got through it because it seems to be blank . I just remember walking back to Sebastian’s ward at 4.30pm to ask if there were any news.

The Phone Call

Just as we were about to head into the lift my phone rang, I didn’t have time to think I just answered quickly. The first words the surgeon said was “He’s okay” I could have cried with relief! he went on to explain the procedure which was a lot to take in. Sebastian’s tumour was so entangled they decided to remove just over half his liver to make sure they got it all, he had lost a lot of blood and required a full blood transfusion, he was breathing on his own and didn’t require to go on a ventilator. The next 24hrs were going to be crucial. He told us we could go and see him in intensive care.

Intensive care

Arriving to alarms going off on the intensive care ward the joy of seeing Sebastian breathing was everything to me and I was able to see past all the machines and tubes but my husband really struggled and only stayed a short while before having to leave. (They don’t encourage parents to stay long on the intensive care ward so I only stayed an hour). When Sebastian looked up at me (I will never forget this) one tear rolled down his cheek. To this day I don’t know if his tear was of joy seeing his mummy or that he was sad or scared. I guess I will never know.

Going Home

5 days later Sebastian had made such a remarkable recovery they allowed us to go home. He amazed the surgeons; in fact one of them said “I think someone forgot to tell him he’s just had major surgery” from there onwards Sebastian has grown into a healthy 7yr old tall boy and currently wears clothes to fit 10 yr olds! After having check ups regularly at the start we now visit Leeds 2 yearly, our next visit is next month.

What is a Mesenchymal Hamartoma?

Mesenchymal hamartoma of the liver is the second commonest benign liver tumor in children, yet its biology and pathogenesis are poorly understood. Cytogenetic studies have suggested that the tumour may be a neoplasm rather than a hamartoma. Typically, it presents as a large benign multicystic liver mass in a child younger than 3 years amenable to complete resection. However, its imaging characteristics are variable, ranging from a few large cysts to a solid mass occupying one or both lobes of the liver. In addition, the tumor occasionally contains angiomatous elements or is multifocal. Most tumors gradually increase in size, some reaching enormous proportions, which can make surgery challenging.

A special Thank you

I have to say a huge thank you to the Leeds Liver unit, surgeons, nurses, consultants and doctors that looked after Sebastian. You are all my heroes and I am forever grateful to you all. I also thank my wonderful family, my late father was truly amazing by going down to our house and taking care of my younger daughter and son along with my mum. My eldest son, Ash and Daughter Bethney, we’re incredibly supportive too and they stepped up being second parents to Ellie-May and Dominic for almost 2months. I love and appreciate you all

My family, last picture of us all before my Dad passed away in 2017.

Sebastian Today.

A grateful mum that feels blessed everyday that Sebastian is in our lives. Love you little Man ❤️

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