Samuel my middle son was born with what is called Bilateral Talipes but is commonly known as club feet which has caused his feet to severly deformed as well as his legs and knees. Sam however is a rare case and is in the top 5% of being the worst
(my family does nothing by halves it seems). But I wanted to write this for all those that have had children born with disabilities or are pregnant with a child who has some form of disability. As well as I guess to educate those that don't to let them know, you can't catch talipes!!
At four months pregnant I went to have the ultrasound of Samuel to find out that my son was going to be born with a deformity, the radioligist turned to me and suggested that I should "abort it" in her words, I should have known then that some people wouldn't be too understanding that my son is a wonderful boy, with bent legs.
When Samuel was born we underwent a series of plaster casting, which involved the doctor coming plastering Samuel's legs up to his hips (forcing his feet straight), and then a week later my husband and I having to soak the plasters off and take Samuel back in to have it repeated all over again. I learnt to gain a real sense of humour through this, as it was done in a public plaster room, so we were able to watch full grown men wince at the sight of Samuel's little legs being straightened, something Samuel soon got used to. After three months of this happening every week and realising that his legs just weren't straightening, the doctor prepared us for his first operation.
This meant that Samuel would have his foot removed and put back on the way the doctor saw fit. However what we soon began to learn was that because of the severity of Samuel's legs he became some what of an attraction and guinea pig. Once the operation date came nearer we began to have to meet with more and more surgeons, medical students, nursing staff, you name it, I think even Earl the cleaner had a good look!
So at eight months old Samuel went into the Northern Hospital in Epping to have his first operation. I was terrified, my husband hid it well. He came through the surgery fabulously. Apart from vomitting all over me after he woke up. But that night things got bad, he screamed and screamed, I couldn't take it anymore, it killed me inside to see my son in such pain. So being the wuss I am I rang David my husband and asked him to take over for me. David was my true pillar of strength throughout the whole thing. After that first night, we were able to bring Samuel home, and we began to wonder if Samuel even realised he had had surgery. He crawled around the floor, nothing stopping him. He even learnt to stand on his plasters.
After six weeks, we took Sam back in to have the plasters removed and see his beautiful new feet. I was hurt though to see that not a lot of change had taken place. I had hoped so strong that this would be it, they would straightened and never again would we have to worry again. But that wasn't the case, not long after being out of the plasters we saw his feet beginning to turn back in. Even while wearing the orthopedic splints that he had to wear twenty three hours a day, his knees turned in. This broke my heart. I felt ripped off, during the time of him being in plasters as a baby we had endured such filthy glares, and such mean comments. One lady even asking David what he had done to Samuel to put him in plaster. Why did my son have to go through this. But then I would look at those huge blue eyes, big smile and cheeky laugh and know that it didn't matter what his feet looked like, he was my baby and I wouldn't give him up for the world, crooked feet and all.
So after three years of orthopedic splints not working, the doctors told us that they were going to do another operation, this time to straighten the actual foot. You see they had a new surgeon coming out from Russia who wanted to see Samuels legs, and wanted the opportunity to trial this new surgery to see if it worked. I felt a little scared by this, but being naiive I never questioned the doctor, after all he is the doctor he should know what he is talking about.
So at three and half he underwent his second surgery, David and I were standing waiting, when I could hear Samuel start screaming, wanting to go in to comfort my son, the doctor came out laughing at me asking me what was wrong. I said "I can hear Samuel crying, I want to go into him" the doctor told me that he was fine and not to panic they would let me in soon. So after another ten minutes of listening to my son become more and more hysterical they finally let me in to see him. By this stage Samuel was clawing at his face, he didn't recognise me or his father, he was terrified and confused. The doctors answer to this was give him morphine and a child's version of valium. Which of course caused more confusion and more hysteria. We ended up spending four days in hospital, Samuel being pumped every six hours with morphine and every eight with this child's version of valium, whether he was screaming or not. So when we went home we were told to give him panadol if he was upset. But unfortunately this time it was harder, he had become dependant on the drugs they were giving him, he wouldn't settle at night, I had to sit with him and hold him, but it hurt him to have me hold him. He was still confused. I was broken.
Then from under his plasters started a horrible smell. It was the most disgusting thing I had ever smelt. We took him to the hospital and were told there was nothing they could do about it, but my gut said this wasn't the case. I knew that something had to be done, there was something wrong with my son. Out of desperation with my cousin at my home, we decided to put him in a bath to soak his plasters. And then take him to the hospital and say he fell in the wading pool (as it was hot). Once the hospital removed his plasters they saw that he had a massive infection in his foot where the pin had been. Samuel was then put on antibotics and an appointment was made to see the surgeon. The surgeon told us that the infection was normal for someone who had the plaster removed a week early. This just didn't sit right with me. So when the surgeon told us that he would be doing the next surgery, which would involve shattering Samuel's shin bone and fusing it, I had had enough.
I got on the internet and found sites for club feet and asked questions about changing doctors, and was told that I could do that without a problem. So I rang the children's hospital to see if we could see a surgeon there, and they couldn't have been nicer. Since going there I have found out that the operation that Samuel endured at three months old was unnecessary and ridiculous, that fusing Samuel's shin bone would prevent his growing.
So now Samuel is coming up to another surgery in the next few weeks. This surgery will be a long drawn out process but has the best results. It will involve putting corrective cages on his legs, to teach the bones, muscles and tendons to stretch and stay straight. It will mean that he will be in a wheelchair for a lengthy time, but it will be worth having a son who will be whole. But you know as much as I would give up the club feet any day, I wonder if my son would have been the same boy he is today without having gone through what he has.
Samuel has a wild sense of imagination, he is the funniest kid alive and gives his whole family a laugh and a half, he loves fixes things, pulling stuff apart to see how it works and then putting it back together. He is an adventurer and isn't afraid of much at all. He is a hopeless romantic who woo's the girls and women alike, with eyes and a smile that can brighten up the darkest day.
So next time you see a child that has something wrong with them, don't stare, don't make rude comments, understand that generally these kids have humungous personalities and a frazzled mother holding their hand, just waiting for that next rude comment so she can rip your head off and kick it like a football to get out her frustration of doctors that want to use their child as a guinea pig.
(August 2007) (
