Noel O'Mahony
G & T Event for Ciara's 18th Birthday
Fundraising for SSNAP
Story
5th of August 2000 was a momentous day in the O'Mahony household, with the arrival of our first child, Ciara.
At a very uncomfortable and turgid 38 weeks pregnant, a non-routine scan was performed and it was discovered that Ciara had some fluid on her chest. As not to run any unnecessary risks, and being as good as full term, action was taken to be induced on August 4th at the John Radcliffe Hospital in Oxford.
After a challenging and tiresome 18 hours of labour, baby Ciara arrived safely weighing in at a bonny 8 lbs. She was distinctly an O’Mahony in all her features and quite miraculously beautiful for a newborn. We can vouch for that since having had two further children, who, without wanting to sound cruel, did not have their sister's initial, immediate good looks! Gorgeous as they are now, of course!!
Unfortunately, as Ciara had this fluid on her chest, she was whisked away almost immediately in order to have it drained and consequently spent the first 15 hours of her life on a ventilator. Very quickly, it was discovered that Ciara had a tear in her lymphatic system. As the digestion process stimulates the lymphatics, resulting in a renewed build up of fluid in Ciara's chest, she had to be fed intravenously whilst we waited for either the tear to heal itself or to take surgical action as a last resort. The fluid suppressed Ciara's lungs making breathing more and more challenging for her the more fluid build up there was.
We had a few false starts at bottle feeding Ciara with the TPN (Total Parental Nutrition) which distressingly resulted in more fluid needing to be drained. We realised then that we were in for the long haul and despite feeling cheated that we had been unable to take Ciara straight home, we set our minds quite confidently that this was to be a short bump in what was to be her long and happy life with us and went about reading stories at her beside, changing nappies and caring for Ciara in any way we could alongside the dedicated nurses in the special care unit at the Radcliffe.
The vast majority of the other babies in the unit were premature and we recall feeling a sense of guilt among the other parents as they looked upon our seemingly thriving baby, potentially wondering what all the fuss was about whilst their own precious babies, in some cases, were scarcely formed. Despite Ciara's breathing difficulties, she sucked enthusiastically on her dummy and belted out an impressively high decibel cry when she wanted her nappy changing to challenge the best of them!
Whilst trying to understand why Ciara had this tear to start with, it was suggested by a specialist consultant that Ciara had Noonan Syndrome (https://www.genome.gov/25521674/learning-about-noonan-syndrome/) This really didn't cause us much concern because, as with all syndromes, Noonan's covers quite a vast collection of symptoms, many of which Ciara didn't appear to present. We were not facing anything life threatening.
It was 20 days into Ciara's life that we noticed some leaky fluid under the translucent tape that was holding the cannula on her tiny hand in place. We alerted the nurse and suggested that this didn't "look right" and could the line, through which Ciara was being fed, be changed and cleaned up. We were obliged and thought no more about it. Ciara and I had our cuddles and read our Mr Men books as normal and I was excited at the thought of her moving to the opposite side of the nursery where the babies that are getting near to going home were transferred to. She was doing so well.
We never for one nano second ever imagined not bringing Ciara home but when we left the hospital that evening, the evening of the 24th August 2000, we weren't to know that that was the last time we would ever recognise Ciara as our bonny baby. Routinely, the next morning, after our minimal sleep, as soon as our eyes opened, we picked up the phone to the hospital to enquire how Ciara's night had been. A somber voice informed us that Ciara had had a "nasty turn" in the night and that she wasn't doing very well. They tried to brace us for the drastic change in Ciara's appearance before we arrived at the hospital. Nothing could have prepared us. The doctors had administered a concoction of antibiotics but not knowing exactly what they were fighting, they couldn't target a specific bacteria with a specific drug. Ciara had been ravaged overnight and was on a ventilator.
It transpired that the bacteria, which had originated from "that line" we later discovered, had travelled into Ciara's spinal fluid and the infection was now known as Meningitis and Septicemia. I recall the moment that word was used just thinking; babies die from this; my baby could die. Noel, being the half pint full, positive entity that he is, could not even contemplate such an absurdity. His positivity knew no bounds, bless him.
On August 27th, we took the decision to have Ciara baptised in the hospital. We are forever grateful to Father John Udris (the then resident priest at St Teresa's in Warwick Rd) for travelling to Oxford and performing the ceremony. One of the nurses stood in as Ciara's proxy God-Mother.
Ciara fought hard for such a wee one and we loved how her "sats" always improved whenever we were nearby. It gave us hope that she knew who we were and how much she was loved.
On the morning of Tuesday the 5th of September 2000 (Noel's parents' 40th wedding anniversary and my Dad's 61st birthday!), Ciara was deemed stable enough to be transferred to undergo a CAT scan to determine the extent of the damage from the infection. We left the hospital and wandered aimlessly in central Oxford unable to bear the wait within the hospital grounds. Upon our return, we were gently advised that the damage to Ciara's brain was extensive and were advised that the most humane thing to do was to 'let her go'. Heart broken, we made a decision to contact all our immediate family to rally around and say their own final farewells. It was surreal.
Thereafter, Ciara was taken off her life support machine and we carried her to a private room to say our own goodbyes. She drew her last breaths whilst we cradled her and died in our arms at 10.15 that night.
Despite knowing in our heart of hearts that someone, somewhere along the line, was negligent to have allowed this strain of bacteria to have entered into Ciara's vulnerable little body, we chose not to pursue an accusing course of action. The hospital staff, nurses, doctors and consultants were all incredible during our difficult time at the John Radcliffe. It truly is a vocational profession.They are so devoted to their work and make a significant difference to the world. SSNAP (Support for Sick Newborn And their Parents) is the charity based at the John Radcliffe Hospital in Oxford which supports them in their work by providing funds for vital medical equipment and providing financial and emotional support to the families concerned, amongst other services.
(https://www.ssnap.org.uk/)
We have done fundraising in various shapes and forms for SSNAP before now but not for quite a while. We decided that 18 is quite a milestone and that we would like to commemorate it.
Please dig deep to support us by coming along to our Gin and Tonic tasting event on 5th August or if you can't attend, by donating on this JustGiving site or by buying raffle tickets. There are some fabulous prizes to be won, not least of all a few bottles of gin strangely enough!
If the money we raise can go towards helping some other family with a sick baby, maybe we can help ease their suffering in some small way.
Thank you in advance for your support and generosity.
with love from
Noel, Nikki, Finn & Molly (& Ciara 👼🏻)
Email: nikkiomahony7673@gmail.com for tickets