Our health experience: ‘Finn might look different, but he is just a little boy who wants to play’

Finn Lucey was born with Pfeiffer syndrome causing premature fusion of some of the plates in his head

Sinead and Gordon Lucey with their four-year-old son Finn, who has Pfeiffer syndrome. Photograph: Eric Luke

Sinead and Gordon Lucey with their four-year-old son Finn, who has Pfeiffer syndrome. Photograph: Eric Luke

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We had chosen the name Finn after Fionn MacCumhaill, the Irish warrior. That was before we knew Finn had Pfeiffer syndrome. When we found out about it, we just had to go with it.

He was my first baby and all was going perfectly well; I have 12 nieces and nephews, and there was never a problem with their pregnancies so I didn’t expect there to be any problem with mine.

At my 20-week scan they thought I had a low-lying placenta, so I had another scan at 32 weeks.

At that scan they confirmed he was breech. They also said they couldn’t find his head and asked me to go back a week later. Stupidly, I went for that follow-up scan on my own.

The sonographer said to me she wanted to get a doctor. The doctor said he couldn’t see the baby’s head and there was a 50-50 chance my baby was brain damaged. We live an hour’s drive from the maternity unit and I knew I had to go back to work. I went into autopilot and went back to work. Someone asked me how I had got on and I just burst into tears. My husband, Gordon, rang me and said to contact my GP.

The GP rang the gynaecologist and he said he couldn’t see the baby’s head. I was to have an MRI. At the time we were in the middle of moving house, and living at home with my dad. I went home and lay down and cried my eyes out.”

I had the MRI about a week later and had to wait two days for the results. They said that normally none of the six plates in a baby’s head are fused, but they thought that two of the plates in my baby’s head were fused.

Another consultant said the same thing. They always give you the worst news.

I had an elective Caesarean section at 38 weeks at Cork University Maternity Hospital (CUMH). I was absolutely, completely and utterly terrified before it but kept trying to hide it. Before I went into theatre I was shaking so hard it took the anaesthetist a couple of tries to put the cannula in my wrist.

When Finn was born there was silence in the room . . . They cleaned him up and covered his head with the blanket so all I could see was his face. I thought he was the most gorgeous little boy going. He seemed perfect. He was taken to special care and I was taken to the recovery room. When I saw him again it wasn’t a complete shock.

Three of the six plates in his head are permanently fused and the other three are partially fused. He has a clover-shaped head, and it is very pronounced.

When he was just a few days old we were told we would get to know the road to Dublin very well as he would need operations.

When he was six weeks old he was kept in for a week at Temple Street Children’s Hospital. It was the worst week of my life. There seemed to be so much negativity about how he could be blind, or deaf, that he may not be able to attend a mainstream school . . . I felt completely helpless.

Operations

At three months he had his first operation to insert a shunt to drain fluid from his head. At five months he had his first craniofacial operation, which took six hours. A craniofacial operation involves removing the skull cap and resetting it to make a vault or space for the brain to grow. At the moment there is no room for his brain to grow and he will need operations until he is 12 or 13, when his head stops growing.

He has had three operations so far and I believe all of them have affected his development. He needs them for functional reasons; none has been for cosmetic reasons.

He is behind developmentally. He walked when he was two and a half; he isn’t toilet trained, and he isn’t talking yet but he can communicate with us.

I don’t know if I will ever fully accept things. It is a hard road for him, and when you see what he has to go through, well, it does inspire you. He is still my little boy and we take it one day at a time.

When I was pregnant for the second time, with Finn’s baby brother, Tadhg, I knew there was less than 1 per cent chance of him having the syndrome too. I don’t think Gordon or I slept a wink during that pregnancy. I was paranoid and had loads of scans done, but I was still very nervous. The midwives at the CUMH were fantastic.

Equally, everyone in Temple Street Hospital, which is the Irish centre for cranio-facial care, are absolutely fantastic. We hope that by the time he is a teenager, all of his operations will be complete.

What upsets me is when I bring him out and say we are walking on the street, people stare and they make remarks. I hate it and it cuts through me like a knife. Young teens shout “Look at his eye,” and once a girl of about seven screamed about his weird eyes and the shape of his head. Her mother did nothing.

It is very unfair that because he doesn’t look normal that he is treated like that. He might look different but he is just a little boy who wants to play and laugh. He is as cute as a button; he keeps us laughing and keeps us on our toes.

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