“When my son Conall was born in March this year, we had been prepared by the doctors that he may not make a sound – not cry, or even take a breath. But our little warrior, true to his name, let out a tiny squeal – a sound that will be with me forever.

Conall is the most wanted child. It was a challenging road to fall pregnant and we had finally relaxed once we reached the 14-week mark. We felt hopeful. Things were going well. Then at 17 weeks our world sank. I went for a scan and the consultant found an abnormality. After our challenges falling pregnant, it was so difficult to hear this.

 

Diagnosis

 

Conall had Congenital Diaphragmatic Hernia (CDH). There was a hole in his diaphragm and because of this his stomach, spleen, bowel and liver grew up into his chest, displacing his tiny heart towards his right shoulder and giving his lungs very little space to develop. CDH is a life-threatening condition. We were told his was a severe case and that he had a 40-50% chance of survival. We were devastated.

When the day came for my planned c-section, I was terrified. Hearing Conall’s first little squeal was amazing. And then he was immediately whisked away. No skin-to-skin contact, no cuddles.

Conall couldn’t breathe on his own so he was taken to be intubated and prepared for transfer to the Paediatric Intensive Care Unit (PICU) in CHI at Crumlin. I watched him go with the neo-natal team and with their uniforms and backpacks on I remember thinking to myself, “he’s off on his first scouting expedition”.

 

Surgery

 

At five-days-old, we entrusted our tiny, fragile baby into the hands of the surgeons in CHI at Crumlin. I cannot tell you how helpless we felt. But we had hope that he would make it through.

The surgeons re-assembled his organs and repaired the hole in his diaphragm. Now that there was room in his chest, his tiny heart would go back to where it should be. But his lungs were under-developed and struggling.

During the next five crucial weeks, Conall remained under the close care of the expert teams in PICU. He gave us a few frights, having increased pulmonary hypertension and getting sepsis. Twice he deteriorated badly and his tiny lungs collapsed due to the immense struggle they were under.

As the parent of a very sick child in PICU, you feel helpless. I felt like I couldn’t be mammy to Conall in all the usual ways – I couldn’t change nappies, wash him, feed him, comfort him. When your baby is intubated, you can see when they are crying, but there is no sound. And you can’t pick them up to cuddle them. It’s horrendously tough.

 

Our First Cuddle

When he was two-weeks-old the nurses carefully lifted Conall and put him in my arms so we could have our very first cuddle. It was such a great feeling. It was the special moment I had missed at his birth – that moment that all mums-to-be dream about, holding their new baby.

After that I could only touch and rub his hands, feet and back until he was about six-weeks-old. Sitting in the chair in his room in PICU, I was holding Conall, singing “Somewhere Over the Rainbow” to him, as I often did, and he fell asleep in my arms. It was night-time, almost time for parents to leave. A couple of the nurses looked in on us and noticed the special moment we were having. “Stay as long as you want,” one of them said. “You are doing better than you think you are.” It was what I needed – to have that moment with Conall. And it was what I needed to hear. Their kindness has stuck with me.

 

Conall comes home

 

After six weeks in PICU he no longer needed to be ventilated and was transferred to the wards. Once he was there, I could start to do all the normal mammy things for Conall – wash him, dress him, lift him off the bed myself. Conall made great progress on the wards and stayed there for three weeks in total before he was discharged.

Conall still has challenges and is still in the care of CHI at Crumlin. We take him there every six weeks so they can keep a close eye on him. We’ll keep him cocooned, particularly due to COVID, as he is at high risk of flu and respiratory infections. Due to the possibility of re-herniation or bowel obstruction, common in CDH babies, and possible scoliosis, he may need surgery at some time in the future.

But we are optimistic about the future and very excited for Christmas. I am really looking forward to hanging up Conall’s stocking on the mantelpiece this year right next to Freya’s, and filling it with things that he can grab and chew – that’s the stage he’s at. It will fill my heart with joy to wake up at home on Christmas morning and watch Conall and Freya open their presents from Santa and play together. Freya says herself and Conall are best friends just like Ana and Olaf from Frozen.

Right now, in CHI at Crumlin, there are tiny babies, just like Conall, on the toughest of journeys. They need your support so that the incredible care teams continue to have access to the world-class equipment and research that their little patients need to have the very best chance to get better and come home.

You make all the difference

I know well just how your support, your big heart, makes all the difference to the tiny hearts in CHI at Crumlin. Advancements in recent years in technology, equipment and treatment, made possible through the kind support of donors like you, helped Conall survive his diagnosis.” -Katie, mammy to Conall and Freya.

With your support we will continue to do #WhateverItTakes for children like Conall. Will you give a special Christmas gift today to help give critically-ill babies like Conall the hope of many more Christmases to come?