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Colleen and Daniel's Story

18 May 2022 Colleen with her son Daniel

Brave Daniel’s mum Colleen could barely believe what she was seeing from her little boy. 

Less than a year into his tender life, a kidney condition led to crucial surgery at the Royal Hospital for Children - which included an incision similar to a caesarean section. 

When Colleen saw him crawling around in his cot days after such a procedure it reminded her just how strong her son is. This is their story, in her words. 

Daniel’s diagnosis 

Daniel was admitted at five months old in June 2018 to Wishaw General, where it was discovered he had a urine infection. He was discharged after a week but after an outpatient scan the following day we were admitted as an emergency to the Royal Hospital for Children for further testing.  

We were placed on the burns ward, and it was our first eye-opener to life in a kids’ hospital. The following day Daniel was taken to theatre where Mr O'Toole confirmed that Daniel had Bilateral Congenital Bladder Diverticulum, where there are pouches protruding on each side of the bladder, and Vesicoureteral Urine Reflux grade 5. I was advised it was relatively rare to have a combination of conditions to that severity.  

This had caused Acute Kidney Injury to both sides and required surgery to correct which ideally would be done after age one when he would be bigger and stronger. Unfortunately, Daniel had a further couple of breakthrough infections through his precautionary doses of antibiotics and the decision was made to operate at nine months old.  

The surgery went ahead in October 2018, and we stayed in the hospital for just under two weeks. It went well. Daniel slept for the first day out of theatre but within days I found him crawling in his cot (he had learned to crawl three weeks before surgery) with his catheter bag and drains all still attached! He had a similar incision to a C-section – I would not have been crawling around after four days!  

Daniel stayed strong during his hospital journey

In September 2021 we were unfortunately advised by the Renal Team that Daniel’s kidneys have shown no growth since his first diagnosis. Although there is a chance they may yet start growing, there is severe scarring on both, and we now wait year to year to see if they can continue to support his growing body. 

Only now does his condition devastate me - I struggle still to get my head around it. At the time, my husband and I very much went into autopilot and just did what was necessary. Looking back, it may have been shock and denial! 

Helping hands 

I was so upset when nothing I was doing was taking my baby's pain away. It is the most helpless feeling. 

Mr O'Toole and his team as well as Dr Athavele and the Renal department are amazing and they continue to monitor him. The nurses that came in through the night were fantastic. They did nappy changes where necessary so I could sleep which was my absolute saving grace during our time in hospital. With a baby that didn't talk, just having them there for the 12 hours a day when my husband had to go home was amazing. 

Daniel was only a baby while in hospital, however we were able to go to the playroom on Ward 3C every day and select a new toy to keep him interested.

The Play Rooms are fully stocked thanks to Glasgow Children’s Hospital Charity. Once his lines were mostly all removed, we joined in with the play team who made a hand and footprint picture which is still proudly displayed in our home.  

Daniel's hands and feet poster

I was just out of a shower and Daniel could not be bathed yet, so it was a very messy activity to choose. But after a week in a hospital room, it was a positive experience that placed a smile on one tired mums face! 

Giving back 

I responded to an advert I saw on social media from Glasgow Children’s Hospital Charity appealing for volunteers just before Christmas.  

My husband and I work full-time and there never seems to be enough hours in the day.  

Whilst I have continued to support the Charity financially with donating to fundraisers and buying raffle tickets, I had not considered volunteering before due to Daniel’s age.

When I found out I could bring Daniel it seemed perfect. After some initial nerves, we absolutely loved our experience of bucket collecting. Daniel had loads of fun holding the bucket and his handsome face meant his bucket collected more than mine did – that's for sure! 

Daniel out fundraising for Glasgow Children's Hospital Charity

‘Our Miracle’ 

Daniel was only a baby when in hospital, but he is a laid-back child and always has been. He made it easier on us than it could have been and nowhere close to what others experience. 

Our boy has exceeded all expectations in the Urology department. Mr O'Toole was clear before surgery that there is a risk of incontinence. Before Daniel turned one, we were preparing for a life of incontinence. We started to get our heads around this but at two years old he got up from the dinner table and went to his potty!  

He needs to visit the toilet much more often than his cousin who is the same age and has stress incontinence sometimes from things like jumping or laughing. We don't get much notice when the this happens so we need to stake out the toilets everywhere we go but he is our miracle, and he is getting on fine. 

Covid-19 brought about a huge challenge with being able to take Daniel out in public whilst maintaining his dignity. Public toilets have been closed, and we have at times been denied access to disabled toilets. Ensuring he has a sufficient intake of water is a daily challenge and is a group effort between us, his family, and his Nursery teachers.

Daniel has recently has a set-back with his bladder and we have an emergency appointment with Mr O'Toole this coming Monday. Daniel is four and very aware of who Mr O'Toole is now. He loves the 'Rainbow Hospital' as he calls it and has no anxiety about going to the hospital.

Daniel laughing in his cot

He asked if we would get to see the 'black dot' in his tummy (his bladder on ultrasound) and he loves the interactive toys in the waiting area and seeing the different displays that are up on special occasions in the hospital foyer. He also looks forward to visiting the Glasgow Children's Hospital Charity shop where he helps Mum stock up on keyring trolley coins and pens on every hospital appointment!

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