Like many families, the McMenamins from Letterkenny were left devastated when told their son Sean had a serious heart defect.
But through the wonderful work of the Children’s Hospital in Crumlin, Sean is fighting fit and ready to take on the world.
Here, to coincide with a charity night the family are hosting at the Karting Centre in Letterkenny tomorrow night, mum Sheila tells the touching story of a family’s fight for their young son.
In times of austerity, water charges, Garda whistle-blowers and elections, it gives us some hope that deep down people are still good.
“This is Sean, our bright eyed and bushy tailed wee man!! He was born 6th, 2013 in Holles St, Dublin. Sean’s story is not unique and is probably more common than a lot of us realise.
“Last year while attending the ‘big’ scan in Letterkenny, it was detected that there was an issue with his heart, now Sean being Sean, wouldn’t move or position himself in a way that might give anyone a chance of a clear heart view!!
“So a week or so later we went to Holles St and it was confirmed that yes there was a serious heart defect there.
“To say we were devastated was an understatement. We drove home fairly quiet and so it began. We met with the cardiologist that was based in Our Ladys Hospital for Sick Children, Crumlin (OLHSC) and he confirmed that Sean had an AVSD – which meant his heart only had 2 chambers with only one valve. They did go through what would be done but to be honest at that stage, most of it went over my head especially when they refer to his heart being the size of a strawberry!
There were many black days of worrying what to expect and we had been told that no surgery would take place until he was 5kgs and that if there was any other issue with any other organs there would be no surgery.
We had an amnio (tests) done and it was confirmed that Sean was also Down Syndrome. We were told that feeding would be a problem and to prepare for anything up to 6 months in hospital if he didn’t put on weight. With 2 other kids at home and Danny being self employed the thought of factoring how my life was to go on without me in it for that length of time was challenging to say the least! At one of our cardiologist appointments I was interrogating the consultant on exactly what I would need for Crumlin and he said he would get one of the specialist nurses to ring me. This was my first contact with Crumlin and to be honest probably one of the first times I breathed normally!!
I had a list of questions as long your arm! Would the baby survive? Would he be incubated? Would I need to have him christened at the hospital? What did I need to bring? And the list went on! Over the time of the phone call, I was calmed and reassured that while his condition was serious, he was still a baby and yes he would need all the normal baby stuff!! It was arranged that at our next Holles St visit that we would call over to Crumlin where our nurse would show us the ward so we wouldn’t keel over when we arrived with Sean!
Now I don’t know what bubble I live my life in – but my eyes were opened. We met Jackie inside the door of the hospital and it was like meeting an old friend! We chatted like it was a normal day and then we went to St Theresa’s ward …. It was packed and a hive of activity and I have never seen so many sick children ever before. All the nurses were flat out but they were all smiling and just carrying on with what they do. We left the ward, slightly overwhelmed, nervous but relieved that we had seen where Sean would be.
Jackie was still as chilled as you like and in hindsight her calm approach kept us upright while we were there. She arranged that on our next visit that we would have a look at the intensive care unit and as she put it – nothing like a bit of advance warning!
It was arranged that Sean should be born in Holles St given its close proximity to Crumlin and on 6th within 2 hours was transferred to Crumlin while I sat like a tulip in Holles st feeling all my aches n pains and feeling very sorry for myself!!!
On the Friday, I signed myself out of Holles St and headed over to see Sean. I was glad that I had been in the ward before as at least I knew where I was going and it wasn’t as scary although still eye opening. Sean was cubicle 6 and when he was admitted there was 8 other babies there, on Friday evening there was19. Sean was lying back and was being tube fed every 3 hours and was on a stats monitor (now to us lay people, this machine continually checks his heart rate and also his breathing and just so you know …. It beeps and beeps and beeps every time u move!!!!). Once we arrived, Sean’s nurse came in to say hi and give us an update on how he was doing. Sean slept!! We were told of all the checks he had done the previous day and that morning and that he was very stable and very sleepy! At this stage, reality was sinking in fairly lively! The extent of road ahead was now very real and the fact that Sean couldn’t drink much of his bottle brought a whole new angle on tube feeding end of things. But that’s when the nurses kick in! Slowly we were encouraged to take small steps and work with Sean and everything that went with it; try him on the bottle, check the tube is still where its meant to be, tubing through the rest of his feed, not keeling over every time the stats monitor goes nuts!! Every nurse that looked after Sean spoke to him like he was one of their own! The team that followed Sean was mind blowing, Speech therapists, dieticians, pharmacists, consultants, radiographers and the full complement of nursing staff. And each member supportive, pleasant and always there to answer my often daft questions.
Over the next couple of months, Sean was at home being tube fed, on constant oxygen and settling into life at home with 2 doting sisters at his side every time my back was turned! It was hard, but its amazing what you do without even thinking about it times. Every week we spoke to Jackie in Crumlin about Sean’s weight gain.
And as always, there were often calls with daft questions too.
In September we got the call that Sean’s heart surgery was booked and my heart sank. But again the girls in Crumlin knew the enormity of the phone call and were as supportive and as reassuring as they could be. The dread, the relief the mixture of emotion was unnatural. Sean’s surgery was rescheduled twice and then on the September we were admitted to Theresas ward again for surgery the next day.
Once Sean arrived on the ward, there was an automatic recognition of the wee man and all the nurses that looked after him in June all commented on how big he had got and given the number of children these people see in any given week is amazing that they would remember our Sean!
Sean appeared with authority!!! He was taken to ICU and Mr Nolke, Sean surgeon, arrived into Sean’s room like any normal man. He went through the procedure and was more than willing to answer any questions – just pure normal!! Mr Walsh, Sean’s Cardiologist called to say how well Sean was doing and that he was happy with his progress. Jackie called in and went through how the day would pan out and at what stage of surgery she would ring us to update us on how things were going. We walked Sean down to theatre at 1:06 on the Monday morning. To say handing my wee dude over was hard is an understatement, he smiled all the way down the corridor and it was the hardest moment of our lives.
The day passed so slowly, Jackie in fairness to her called us at every stage, being ventilated, going onto bypass, starting surgery, finishing surgery, coming off bypass and to recovery and then to ICU. It was 8.46 pm when we saw Sean. Thank god we had been shown ICU on a previous visit because it is one of the scariest places I have been. Sean was sedated when we went in but he did wiggle about a bit when we spoke, we couldn’t stay long, it was better for him stay still and he wouldn’t with us there.
The reassurance of knowing that there is a specialist nurse there minding just Sean was enough to keep our minds at rest. ICU was full all with wee babies fighting their own corners, all with the help of their own nurse and a team that can only be described as genesis!
On the Tuesday, Sean had one of the three drains removed and he abandoned the ventilator and for the first time since June was not on Oxygen!! (We could get rid of the canisters at home and the machine that sounded like a tractor with serious engine issues!!!!!)
On the Tuesday morning when I went in to sit with Sean, a handmade crochet blanket was at the bottom of his bed. I told the nurse that it wasn’t Sean’s and that it would be safer being removed before it was christened! But Deirdre (his nurse) told me ‘that in hospital doctors and nurses have to do what they do and there is prodding and poking, giving injections and examinations at different times of the day and this blanket is a comfort to hide behind.
It is their comfort that they can hide under when it all get too much and they have it forever. Volunteer blanketeers make and donate blankets so any child that has heart surgery gets a comfort blanket’. I was gobsmacked; the lump in my throat was so big I thought it would explode. People are good.
He was due to go to the ward at a stage on Tuesday but all the beds in the ward were full so he stayed for another night in ICU. (Personally I think he was enjoying the 24/7 one to one!) He moved back to St. Theresa’s on the Thursday, and god love him – he didn’t like the drains. I have never seen him lie as still as he did but we did get a few wee smiles and an odd tug of the hair if it came any way close!
On Friday the third drain was removed and when I came back to the ward, Sean was sideways at the bottom of the cot!!!! He was put on special milk as fatty deposits were picked up in the drains and Sean wasn’t too impressed (the smell would have knocked you over!!) so the tube was still there but in fairness the wee man didn’t seem to mind that much as long as he got fed and didn’t have to taste it.
We left Crumlin the following Wednesday on 8 feeds a day of the smelly stuff! The nurses all bid him farewell and Sean smiled the bit out!! (Such a ladies man!!!) We had 6 weeks of the special milk every 3 hrs. It passed in a blur and the relief when we were told that we could go back to normal baby food! Mr Walsh was as lovely as ever, back up in 3 months to make sure all is going as it should. Surgery had gone exceptionally well and by the looks of things no more surgery needed.
Sean attends Crumlin now every couple of months, he is now the full of life wee boy that he is meant to be. He terrorises his sisters, has his mom and dad on 24/7 call and has it all sussed!!
We are lucky; we have come through a bumpy road with the support and help of family, friends and a fortune of holy candles, masses and prayers. The list of people that we are indebted to: The Paediatric Ward in Letterkenny General Hospital, Caroline/Mary – District Nurses, Mary Murray – The specialist cardiac nurse (the genius that makes it all seem so simple!!), Donegal Down Syndrome, the Early Intervention Team and so many others.
But today it is about Our Lady’s Children’s Hospital, Crumlin and the reason we are “karting for Crumlin”. As a unit they have gently nudged us through one of the toughest challenges to date! This is their normal – they do this all day every day and until you experience it you just don’t appreciate to work they do.
We would like to thank John Dolan, a patron in fundraising for different charities and the Donegal Motor Club for helping us in this fundraising effort for Crumlin. We hope that you can join us for this worthy cause and you never know; Sean might have to get a wee lap round too…….!Tags: