World Prematurity Day aims to raise awareness around issues related to preterm birth, and optimising development and outcomes for preterm infants to ensure that they reach their full potential. The colour purple stands for sensitivity and exceptionality. According to the World Health Organisation (WHO), around 15 million preterm births occur globally each year. 1 in 10 babies are born preterm worldwide.
In CHI, we want to celebrate all of the exceptional preterm infants and families that have come through our doors. We want them to feel supported on their journey and to know that they are not alone.
Our journey began in February 2021 when we found out we were expecting identical twins. Everything was going to plan until a scan at 24 weeks in late May showed early signs of TAPS (twin anaemia polycythaemia sequence). A scan at 25 weeks showed signs of TTTS (twin to twin transfusion syndrome). Both are rare conditions that occur when there are unequal blood counts between the twins. In early June, at 26 weeks gestation, another scan revealed the TAPS and TTTS had progressed significantly. The only option was to deliver the twin girls immediately in order to give them the best chance of survival. Four hours later, Éabha and Fiadh were born, both critically unwell. Éabha was 600 grams (1.3lbs) and Fiadh was 800 grams (1.7 lbs).
We were heartbroken when we lost Éabha after seven days due to severe anaemia and respiratory failure. Our world was falling apart but we needed to stay strong for Fiadh as she was still very sick. On 15th June, the same day that we lost Éabha, Fiadh was transferred from the NMH Holles Street to CHI at Crumlin for emergency surgery on her bowel. We will be forever grateful to the surgical team in CHI who saved her life on this night and again seven days later when she required another, similar surgery. Within one week, she required these two life-saving surgeries, following which, she was transferred to the paediatric intensive care unit (PICU), where she remained for the next four months.
The summer of 2021 was a rollercoaster of ups and downs but we settled into a routine of visiting Fiadh every day. She is a fighter and every time she took a knock, she bounced back. We first held her in our arms when she was three weeks old, for a period of 15 minutes. We mostly spent our days and weeks holding her hand through the incubator window. Following her two surgeries, Fiadh now had two stomas on her bowel which created great difficulties with feeding. At one month old, she had a procedure on her heart because she was struggling to come off the ventilator. She successfully came off the ventilator the following week but two weeks later she got sepsis and had to put back on the ventilator for oxygen support. After two weeks of antibiotics to get rid of the sepsis, she came off the ventilator again.
Her biggest challenge was always poor weight gain so at two months old, in August, the surgical team performed another bowel surgery to help Fiadh better absorb nutrition. This was a reversal of one of the earlier emergency surgeries. It was successful and Fiadh started making some progress. We were so happy that on the twins due date (13th September), she finally got discharged from PICU and onto the ward. Unfortunately, after three days on the ward, she became very unwell as she picked up RSV bronchiolitis and ended up back in PICU for a few days. Once recovered, the medical team decided to perform the final surgery on Fiadh’s bowel so she could properly focus on gaining weight.
The success of the surgery was the turning point for Fiadh. She came out of the incubator and into a cot. She started to grow and get strong consistently every day. She no longer needed oxygen support. I had been expressing milk for four months and finally I could start to breastfeed her. She became more alert and active. And most importantly, we had cuddles with Fiadh whenever we wanted.
By mid-October, we saw light at the end of the tunnel and started to prepare for her to come home and meet her big brother Oisín. After 141 days in hospital, we brought Fiadh home at nearly five months old (six weeks corrected). Her weight was 2.88kg (6.3lbs). At home, we are slowly transitioning her from tube feeding to oral feeding and she is thriving.
We will be forever grateful to all of the medical staff in both NMH Holles St and CHI at Crumlin who saved Fiadh’s life. CHI became our home for five months and the nurses and doctors became our friends as we watched Fiadh fight for her life every day. Our experience in CHI was made much easier because of the love and support shown to both Fiadh and ourselves. Baby Éabha was always looking over her twin and made sure she got home safely.
Tom Óg was born in August 2021 by emergency caesarean section in CUMH weighing just 650g. He was 16 weeks early. We were terrified and completely unaware of what lay ahead. The consultant told us the night he was born that the next 8 hours were crucial, and then the next 8 and so on. If he survived until Tuesday things would look brighter. The first week was a blur. Leaving the hospital without our baby was excruciating. He did well in the first week and got off the ventilator after 4 days.
Unfortunately, the honeymoon period was short lived. He was reintubated 3 days later. The first 5 weeks were tough going and he suffered a sepsis infection and was treated with antibiotics and steroids for his lungs. At 5 weeks old he became extremely unwell. Doctors in Cork tried everything to treat him but to no avail. He was rushed to CHI at Temple Street for emergency surgery. Doctors in Cork warned us that he may not survive the journey to Dublin and if he did, it was unlikely he would survive the surgery. When we arrived in Dublin, the surgeon reiterated what the doctors in Cork told us. He was the sickest baby in ICU, so sick that they performed the surgery in the ICU. He was too unwell to go to theatre on the floor below. We were advised to baptise him now if that was something that we wished to do. A priest came into the ICU and baptised him while the surgeons stood waiting to start the surgery.
Against all odds, he survived the surgery. Surgeons removed all but 35cm of his small intestine. He had severe NEC and was very lucky to be alive. He was operated on 4 days later, again in the ICU, to join together the different sections of his small intestine and to create a stoma. We spent 4 weeks in the ICU in CHI at Temple Street where again he fought off another sepsis infection and eventually progressed to less invasive breathing support. We were transferred back to Cork for two and a half weeks before returning to Dublin for treatment for Retinopathy of prematurity (ROP). He was due to have laser surgery to save his sight, but the disease had progressed too aggressively, and he received injections into his eyes to encourage the ROP to regress and allow safer and hopefully more effective laser treatment in the coming weeks.
While in CHI at Temple Street he reached 2kg, the specified weight for his stoma to be reversed, and he again did really well after the surgery. He has defied all the odds and while he is still in hospital, he is growing well. The journey has been incredibly difficult, but we are grateful everyday to be on it. Not all parents are as lucky. He has endured infections, x-rays, scans, 2 brain bleeds, chronic lung disease, been intubated 7 different times, short bowel, Patent ductus arteriosus (PDA) in his heart, kidney failure, 3 surgeries, countless blood tests, Necrotizing Enterocolitis (NEC) and grade three plus ROP. He still has a way to go on his journey, but he has overcome so much in 14 weeks. All that and he’s still only 5lbs.
The only advice I would give to anyone at the beginning of their journey is take each day at a time. There will be lots of ups and downs. Lean on your support system and know that there will be an end to the NICU/hospital journey.