Hirschsprungs Family Connections

On the 30th March 2012 at 23:13 our world was changed for ever with the birth of our beautiful baby boy Lennon George, and little over 24 hours later that new life was turned upside down when our boy was transferred over to Princess Anne with a suspected twisted Bowel having not been able to pass meconium since his birth.

 

As soon as we arrived the Consultant on call stated that an operation was not required that night as Lennon's bowel was not twisted, which was a relief, little did we know the road Hirschsprungs Disease would take us. Fast forward 3 weeks and 3 washouts a day we were ready to head home after a successful pull through operation. I realise this is a real Fast Forward but to try explain the mixtures of emotions we went through would be longer than Lord of The Rings, suffice to say it can only be compared to a Rollercoaster Ride that we just wanted to stop.

 

As new parents a baby is a lot of work but one with a long term condition left us paranoid and neurotic I just wanted a manual in order to work out what we were doing, for a project manager the unknown is something I am not used to.

 

Looking back we had a relatively easy 6 months, well that's said we did have several dilatations and multiple discussions daily centring on has he pooed and how much poo! Then we started on solids and for us (and I have to point out no one HD story is the same) that's when HD hit home, Len never really coped with this well, yes he went but not enough and would always be distended and we just felt that something was not right, after a period of time of no poo in October we went to our local hospital for a bisacodyl suppository in the hope that this would help him go, within 1 hour of Lennon having this he was being sick at home after a rather panicked drive back to the hospital and within an hour of being in hospital Lennon was on a drip being sick and having violent diarrhoea although they stabilised him we needed to be transferred to Southampton.

 

Now to date it is worth noting we have been transferred 5 times and it is always at night and walking through Southampton General at 3 in the morning is an interesting experience........

 

G4 felt old fashioned and alien and the last place we wanted to be, again how wrong we were, this place of care not only turned around our boy but stabilised us and supported the family, and here we met Karen Dick, who is so much more than a surgical nurse she's the glue which holds the care together for the health and wellbeing of Lennon.

 

I could be here all day and night talking through the good and bad treatment and the good and bad times but over the next 8 months we bounced in and out of hospital and finally in July 2013 with us at the end of our tether we discussed an ileostomy (stoma). We nearly bit Mr Stantons hand off in the anticipation of a brake to the rollercoster. Although we hated the fact Lennon would look different from the outside we could not go on with the current situation and ultimately and more importantly neither could Lennon he had no quality of life.

 

So we were booked in for the op on the 24th July the hottest week of the year, suddenly it felt the dark clouds were lifted from our boy the op was successful and what looked like a pair of lips appeared on our boys tummy. Suddenly the distended tummy had gone and he was pooing. The day we left was so special, you meet some extraordinary people on G4 we talked to one girl who highlighted her experience and the prospect of being in Hospital for the next 3 months, how lucky did we feel, then she asked if we had met another family who were due to be on the ward for 6 months with troubles that made our boys treatment to date sound like he only had flu. We walked out feeling extremely blessed then we stepped in to a lift with a beautiful boy sitting in his wheelchair with his mum pushing him both smiling, even though he was undergoing cancer treatment, thank god for HD we said to each other whist eating a Burger King sat in the sun waiting for our Taxi, for some reason this time felt different...

 

We are 20 months into Lennons stoma we have had a lot more ups than downs with his weight going from the 9th to the 50th centile with outpatient appointments going from every 2 months to every 9 months. Lennon still has HD, obviously, life will be good and bad for all of us but as said above, more importantly Lennon is on the up, and we try not to get too high when life is good and too low when life is tough cos we have our HD family around us, and especially Karen a lady who told us she will be our best friend when we first met her, we thought your alright we've got lots of friends thanks, but now we couldn't agree more...........