10/ Cillian’s Story

Cillian’s family navigated his prenatal CCAM diagnosis (now called CPAM) alongside his father’s battle with cancer. Juggling a high-risk pregnancy, chemotherapy appointments, and early surgery at just two weeks old, the family made it through and Cillian is now a happy, healthy, active boy. Cillian’s mother shares their story of love, hope, and resilience.

As relatively new parents to a seven-month-old baby boy, and five weeks pregnant with our second child, our world shifted overnight. TJ, my husband, was diagnosed with testicular cancer. From diagnosis to surgery, everything moved very fast. He underwent surgery in November 2016 and we were given strong reassurance that it had been successful. Just before Christmas, we were able to share two pieces of good news — TJ’s surgery had gone well and we were expecting another baby.

At our 20-week anatomy scan, we were thrilled to find out that Darragh was going to have a baby brother. That joy was short-lived. At the end of the scan, the sonographer told us she had spotted an anomaly on the baby’s lungs and referred us to a specialist at the Rotunda Hospital in Dublin. The ten-day wait for that appointment felt endless.

The scan confirmed a suspected CCAM — Congenital Cystic Adenomatoid Malformation — a rare condition where part of the baby’s lung does not form properly and instead develops as a mass. The pregnancy was immediately classified as high-risk. I would need to travel from Tipperary to Dublin every two weeks for monitoring, with 28 weeks being a critical milestone. There was a serious risk of foetal hydrops — a potentially fatal build-up of fluid in the baby’s body. The scans would track whether the mass was growing and whether it was placing pressure on the heart. They wouldn’t really know what they were dealing with until the baby was born, but the best-case scenario would be that the mass would not interfere with breathing after delivery and surgery would happen at a later date.

I turned to “Doctor Google” searching for answers, but there was very little information available. Most resources were American and referred to measuring the mass using a specific scoring system, something never mentioned in my scans — which I later learned is because that method isn’t used in Ireland. Irish sources, including HSE and other medical websites, offered very limited detail on the condition. In the end, the most valuable information and support came from the Parents of CCAM Facebook groups, where I connected with other parent whose shared experiences, reassurance and understanding helped me understand CCAM a little more.

Our eldest boy turned one in March. In April, after safely reaching 28 weeks, monitoring was extended to every three weeks. Then, at 32 weeks pregnant, TJ attended a routine oncology follow-up. A week later we were devastated to learn that inflamed lymph nodes had been found and he would need 12 weeks of chemotherapy. Twelve weeks — longer than the time left in my pregnancy. We had no idea how we would cope.

TJ began chemotherapy in Waterford in May. With the help of family and childminders, we juggled treatment, a busy toddler, and a high-risk pregnancy. I had stopped working by then. The plan was one-week inpatient chemotherapy followed by two weeks of recovery, repeated for four cycles. After the first round, the dosage proved too high and TJ was hospitalised with sepsis. Eventually, though, we found a rhythm and the weeks passed in a haze of hospital stays, recovery, scans and getting on with life as best as we could. 

Although a Caesarean section wasn’t considered necessary, we agreed that an elective induction between chemotherapy cycles would be safest — when TJ’s immune system was strongest and as close to full term as possible. We chose 38 weeks and 4 days — June 28th, TJ’s birthday.

After a short labour, Cillian arrived quickly and cried. Hearing his cry was the biggest relief – it meant he was breathing.  He lay on my chest between checks, and initially everything looked promising. A mobile X-ray team happened to be nearby, so he was fast-tracked for imaging. He spent three nights in NICU for monitoring and two nights with me on the ward. After consultation with Crumlin Hospital, we were told we could go home. The mass appeared stable, we would receive an appointment in the post for a CT scan at around 4 months of age, and surgery would likely be planned when he was between 12 and 24 months old.

We brought him home to Tipperary, grateful for the family support waiting for us, in particular my two sisters who were my rock throughout. Two hours later, TJ’s father collected him to bring him to Waterford for his final round of chemotherapy.

In his first week at home, Cillian slept constantly. At first, we thought we were lucky — an easy second baby. But soon it became worrying. He was difficult to wake for feeds, struggled to take enough milk, and began vomiting unpredictably. He wasn’t gaining weight. I felt completely out of my depth. After emailing my obstetrician, she told me to go straight to our local hospital in Kilkenny.

While TJ had finished his last dose of chemo and was home, his immune system was compromised from chemotherapy, so my sister Dee, who had moved in with us for the summer to help us out, came with me. In the paediatric emergency department, after repeatedly explaining that no, I wasn’t a first-time mother and that my baby had a rare lung condition, tests revealed the mass expanding and as a result was slowly compressing his other lung and his heart. This is why he hasn’t putting on weight and sleeping all the time – he was exhausted and using all of his energy to try to breathe. He was now heading for respiratory failure.

We were to be rushed by ambulance with blue lights to Crumlin asap. TJ met us at the ambulance door in Kilkenny to say goodbye.

When we arrived in Dublin late that evening, there was no hospital accommodation available and I had to leave our critically ill, newborn baby and walk away from the hospital. I wasn’t even allowed in to see him in the ICU once they had him settled.

We stayed in a nearby hotel. The next morning, seeing Cillian surrounded by machines, ventilated and fragile, the reality hit. TJ drove up and we had him christened in the hospital “Cillian Thomas” — 35 years after TJ himself had been christened in hospital as a premature baby.

The consultant explained the risks of surgery. Cillian was only two weeks old. The surgery would remove the affected upper left lobe of his lung. The risks were enormous and the surgery would take between 4-6 hours. We were so helpless.

When we finally received the call to say the surgery was successful, the three of us cried. The upper lobe had been removed. The lower lobe, though compressed, appeared healthy. The pressure on his heart was gone.

Seeing him afterward was very overwhelming. He was swollen, on a ventilator and covered in tubes and bandages — our tiny two-week-old baby had just endured major thoracic surgery. I stayed in Crumlin for ten days as he slowly improved. One by one, the wires and draining tubes were removed. Gradually, the swelling came down. The feeding tube was removed. Eventually we could hold him. Finally, he was moved out of critical care.

A few days after returning home, his surgical wound became infected. After being dismissed initially by a locum GP, I returned to Kilkenny hospital. After many tests, including a lumbar puncture, he was diagnosed with an infection and transferred again by ambulance to Crumlin. Five more nights of IV antibiotics followed. Again, we put down our heads and got through it.

The early months were difficult. Cillian developed a cow’s milk protein allergy and silent reflux, struggled with feeding and weight gain, was a poor sleeper and suffered frequent respiratory infections which meant multiple bouts in hospital. Following the surgery, he developed pectus excavatum — a sunken appearance in his chest, more noticeable on the side where the lobe had been removed. We were told this was due to the softness of the bone and reduced lung support and that it should improve over time however we now know he will likely need intervention in his teenage years. He remains at higher risk of scoliosis and continues to be monitored.

Cillian is now nine years old. He plays sports, loves soccer and has a strong right boot! He keeps up with his big brother and his friends and lives life like any other happy, funny, cheeky, typical second child. In 2025, he was discharged from Crumlin and now only requires annual local check-ups.

This week, TJ too was finally discharged from oncology care and requires no more scans or follow up.  He has a great bond with his two boys and loves sharing his birthday with Cillian, the little warrior.

Looking back, we have since learned just how rare CCAM is, particularly in Ireland. At the time, we felt very alone in it.  But through fear, uncertainty, countless appointments, we learned how resilient our family can be — and how important it is to appreciate the small things.