Following on from my post, Heart Spirit and Soul, I wanted to let my readers know about something they may not have heard of before. I certainly had not heard of it, so I doubt that you might as well, and so today I want to raise awareness on this topic really close to my heart.
I also wanted to highlight the plight of many mums and dads out there, that face medical adversities when it comes to their new borns and babies. I speak only from my own experience, but this blog today is dedicated to all those parents, single mums and single dads that will do whatever it takes for their kin.
I was 22 weeks pregnant when I went in for my routine check up. Both my girls were seen by a renowned Gynecologist/Obstetrician in Johannesburg. My Dr had been practicing for years. Everything had been going really well with baby. Hubby came with me as I went in for my scan and Dr started the ultrasound. Hubby chatted to him and made a few casual jokes as he always does, but Dr seemed to be looking at the screen really intently. He was very silent which was unlike him as we were always chatty. His silence felt too long for me, and instantly I had an instinct that something wasn’t right.
I asked him, “Dr , is everything alright?” He said we would chat in a moment. I knew then for sure, that something was amiss. My heart sank without even hearing what he had to say.
Hubby and I were both really anxious. He then told us very succinctly, that our baby has Club foot. Now hubby and I had never heard of club foot in our lives and honestly had no clue as to what that was, and certainly no idea on what that meant for our unborn child.
We were scared. Dr explained that instead of her foot turning outward, her foot was turning inward. He also said that he wasn’t sure as he couldn’t see the other foot on the scan, and we needed to be referred to a Professor at another hospital to check if it was bi-lateral club foot (both feet). My head was reeling. I started to breathe erratically. I had no idea what this was. I was completely out of my depth.
I asked Dr what was the treatment for this and whether treatment could be started immediately. Dr told us that treatment could only start when she was born. He then said that the treatment was very advanced and she would be walking before she started school. I was beside myself. I couldn’t deal. What did he mean she would be walking before school? School starts around three and a half, so does that mean she wouldn’t walk before then? I was so confused and I was so angry. Dr gave us details for the Professor and for the Top Specialist in Johannesburg who treated club foot, and we left the rooms feeling forlorn. I felt ignorant that I didn’t even know what my baby had.
We were both very quiet on the way home. As soon as I got home I started to Google, “Club Foot’. I wish I hadn’t done that. I saw all these images of the treatment for this and it scared the F*%$#@! out of me. It made me even more despondent. I copied and pasted extracts from Google so I could find out as much as I could but there wasn’t too much information. Hubby the eternal optimist told me not to worry, and that everything would be okay, but honestly, I wasn’t so sure about that. I knew that we had to be brave and I certainly didn’t feel brave at all.
Professor confirmed that it was bi-lateral club feet. I went home that day and went straight to bed. I cried. I cried for my unborn child because I didn’t know how to fix this whilst she was still in my tummy. I cried for myself because I felt selfish for a moment. I cried because I didn’t want my baby to go though any kind of pain whatsoever.
Everyone wants their babies to be perfect don’t they? I let myself have my moment. Hubby saw me under the covers for almost the entire day after the appointment, and let me have my time. I needed a time out to digest and think. When I got out of bed, I realized something. I had battled to have Alia for 8 years and here was this amazing little girl who came along , just like that, from the One above. Why on Earth was I looking my beautiful gift horse in the mouth? My child was perfect, in ….. every…. way….. and there was just never going to be two ways about it. I decided then and there that whatever it took, I would do it. No ifs ands or buts, it will be done! And she will walk, she will run, she will do whatever kids her age does. I allowed myself that one afternoon to have my pity party. Then I went into my “Supermum” mode. If I wasn’t going to be brave and protect her, who was? Hubby and I were on the same page with this.
I googled the Dr we were going to see. He wasn’t going to come cheap as Medical Aid didn’t cover this procedure in its entirety. All appointments were going to be cash. So we needed to ensure we had the money to take her for her appointments. I read up on the process he was going to use called the “Ponsetti method” and I was relieved to hear that he had actually learnt the process from Dr Ponsetti himself, from the United States and brought his learnings here to apply to club foot patients here which he had been practicing for several years which immediately put me at ease. She was going to be in good hands.
When it came close to the time that Jiya was due to arrive, I was as ready and informed as I could be, but I had to be brave. She was in ICU for 11 days and then I insisted on taking her home to perform a traditional prayer ritual before her treatment started. What Hindi speaking people call a “chutee” to bless and protect the baby. We got to do that with my parents and close friends around. It was beautiful and I felt complete.
And so it began. The process involved applying of a plaster of Paris type cast on a weekly basis. Jiya had to have her first cast applied when she was 1 week and 4 days old. It was heartbreaking to watch the first one as she cried so much as the plaster hardened and got cold. i cried just as much but again only allowed myself five minutes to do that and then, I stopped and focused on her.
She could only take a bath once a week when we went back to the Dr to reapply the cast. Each week would be really hard as we would replace and it would harden and she would scream and cry. We did this for 6 weeks. It was a long, six, weeks. And it was hard to see her cry but the Dr assured us that she was not in any pain. For us it meant no sleep as she tossed and turned to find a spot.
She then had to undergo surgery at 3 months for an Achilles tendon op. I was devastated as it required her to go under anesthetic. I sat in the hospital cafeteria with hubby and just prayed. It was all done in an hour and she was such a fighter that when she came to, she smiled at us! As a baby I do not understand how she faced her adversity with such strength.
It was then time to have her shoes fitted. Now the shoes were special shoes ordered from the US and they are designed to fit feet outward. So basically they were trying to manipulate her feet as it was young and tender to start growing in the right direction. The shoes are attached to a metal bar. That freaked me out at first. I couldn’t understand how she was going to use this. I felt like I was going to hurt my child by letting her use this. When I went in for her appointment I sat in the waiting room and I saw a little boy come in. He was walking perfectly fine. He couldn’t have been more than 3 years old. And then I saw his mum carry the shoe that Jiya was going to have fitted and then I realized that this was going to make a huge difference in her life! It took a lot of convincing to others that she was not in pain when they saw her. Especially my folks. And I didn’t blame them. The contraption does not look like it is doing any good except causing pain, but let me tell you that this shoe has changed the way of life for my child!
The first three nights with her wearing the shoe was really hard. She needed to adjust to them and she cried so much. At one point I wanted to remove them but I remembered that our Dr said that she will adjust very soon and she will not be in pain but rather it will cause discomfort until she settles.
Club feet occurs with 1 in every 1000 babies born. Some children have it on one foot and some on both. Jiya adjusted to her shoes well and she needed to wear them 23 hours a day with just one hour to bath and change her. The most difficult thing was not being able to breastfeed her as it was hard to position her with her casts on. All her gifts that had full legs had to go back because they weren’t suitable for her to wear. When I wanted a cuddle there was an iron bar separating us but I placed her on the bed and always got close to her and cuddled with her.
She is now 14 months old and on her second shoe. By the grace of the One above she started walking at 13 months old. We have reduced her hours of wearing her special shoe as per her Dr to just nap times and at night so 14 hours daily.
Its taken strict rule following from myself, my hubby and my nanny to ensure we keep to this routine despite her meeting her milestones. We are a strong formidable team, that make sure she gets to do everything she wants to do.
When people see her shoes, they feel like she is in pain and I get a lot of stares. I even get told that she’s walking now and why dont I stop her wearing them? What they don’t realize is how this treatment has allowed my child to walk! Jiya can hold the bar between her shoes like she’s weightlifting. She can stand with these shoes , she can crawl with these shoes on. This advancement in medical technology and this method has changed our lives and that of our little girl. Her treatment must continue until she’s 3 religiously to ensure that she completes her treatment in its entirety.
Whilst it seemed daunting and long to us initially, it is now a part of our daily routine.
Last year when we had Jiya’s shoes on and we were packing our car with some groceries, I had a middle aged man come up to me. He asked me if I didn’t mind if he showed his son my daughters shoes. At first I was a bit hesitant, but then I saw the young man and his dad said, “ My boy, these are the shoes you used to have as a baby.” He then proceeded to tell us that he never took a single picture of his son wearing the shoe as he was so upset that his child had to wear them. He said that his son is now 14 years old and has his National Colours for two sports at his school. I looked at this tall , blue eyed , blonde haired boy and thought, look at that. Just look at that.
We are still on our journey, but to those of you who didn’t know what this was, now you have a glimpse of what it is.
To all those amazing kids and supportive parents out there, keep doing what you have to, for a better tomorrow for your kids. They make life beautiful. They make us better humans.
I also want to thank my incredible gynae who was able to pick this up at 22 weeks and guide us on the right path. Also to our amazing treatment Dr of the Ponsetti method who has been with us every step of the way, literally. Thank you, Thank you, Thank you.