Poland Syndrome Support

A Dad’s Story – baby son was born with Poland’s Syndrome

Poland Syndrome | Pregnant When my son was born, it was the most wonderful moment of life. I had been talking to my wife’s tummy for 9 months and now here he was; a genuine miracle. It was a difficult birth and actually ended with the drama of an emergency cesarean section. So when he arrived, safe and sound, it was a huge relief and a torrent of joy.

Everything seemed fine. He had a bout of jaundice which kept him in hospital, but the midwives and doctors assured us this was normal. But it was my wife that discovered George had been born with, what turned out to be Poland’s Syndrome.

As only a mum does, she saw that the fingers on his left hand were joined together. His first and index finger were there, but there was no gap between, the skin overlapped. I was stunned; I had assumed everything was fine from what we had been told, and now we had discovered ourselves George was different. Inwardly I feared there may be other unseen problems that we couldn’t see.

Poland Syndrome Hand in HandWe spoke to the nurses, and they just put it down to ‘webbing’ which could be easily corrected. When we saw the doctor, she referred us on to a specialist hand surgeon. But all the while, we were assured it was a fairly common problem and would be easily remedied.

It took a few months to see our local specialist, who immediately told us it was Poland’s Syndrome. He explained it affected the growth of his arm and hand and that part of his chest muscle was also missing. We were shocked. Not only was our baby going to need an operation, he would always be different to other kids.

As the news of this sank in, I felt so guilty. Like any parent, I just want my child to have a great chance at life, or at least a better life than I. But my son had been born with something that I couldn’t make better. A problem I couldn’t solve for him. I felt like I had failed him.

My wife and I went over and over his condition. I think we were in denial at first. Surely this beautiful bundle of joy couldn’t have any kind of lasting problem? So we looked into his condition and educated ourselves on Poland’s Syndrome.

Poland Syndrome Dad and Baby We followed the process of treatment, but after three visits to the hand specialist and 9 months later, we were no closer to have him booked in for the operation to separate his fingers. The hospital we had been referred to was incredibly busy and it took a written complaint to be seen. I would like to point out that the quality of the advice we received from the hand specialist was absolutely correct, (as confirmed when we spoke to a surgeon later) but it seemed that the hospital was too busy and we would be strung along and have to wait for his operation.

We were desperate for it to be done as soon as possible in the hope that, he would not remember the experience. But given how busy the surgery was and that his need was not life threatening, George was simply checked on at each visit.

It was torturous for my wife and I; we knew he had to have an operation, but we just couldn’t get a definitive answer when it would be. I wish I could say I handled the worry and the experience made me stronger, but in truth I struggled and the constant worry affected me. I took a lot of time of work, which eventually cost me a job.

However, for anything I was going through with the outside world, my wife and I faced it together all the stronger. Unhappy with the delays for George’s operation, we constantly researched treatment on the internet. NHS, private, alternative – we considered everything.

Poland Syndrome Father and SonAs luck would have it, my wife stumbled across a news story on BBC News about a young lad from Scotland who had Poland’s and was going to see a specialist in Derby for treatment.

Upon further investigation it seemed the specialist in Derby was a reputed in surgery for Poland’s Syndrome. We decided we had to take George to see him, and so we approached our GP for a referral. We had to request this three times; we even paid for a private consultation in Derby where the surgeon advised us exactly what would need to be done.

His diagnosis was no different from the first hospital we were referred to, but he advised us the technique of the would have a less difficult recuperation for George. We knew then, we had to do everything to get George to Derby for his treatment.

Poland Syndrome Young Boy Eventually, after three requests; the complaint we made to the hospital, a letter from the specialist in Derby and basically tearful begging from my wife, we were referred to Derby for treatment from our GP.

George had his operation and after care in a timescale as promised by the surgeon, and to my eternal pride, handled the surgery and recuperation like a warrior. It was a huge relief to my wife and I, and it all seems like a bad dream now.

As a father, you want to be able to protect your family, your children, from everything. But unless you are a skilled surgeon, there are things that you just have to ask for help for. Our country is amazing. We are all brought into the world within a health care system that is the envy of the world, (regardless of our cynicism), and I maintain this is so. But one thing I have learned from all this is that you do not have to settle. If you are not happy, you can look elsewhere and you can get help, but you have to be man enough to ask for it, and to realise you don’t have to solve everything on your own.

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