
Cecilia´s journey has never been easy. It all started at 18 weeks of gestation, when I lost all my amniotic fluid from unknown reasons or, as doctors told me, “bad luck”. After thinking a lot about it, we decided to continue the pregnancy “as far as she would want”. That was almost 27 weeks of gestation, when she decided to get out and know the world outside mommy’s belly. The start was rough. Due to lack of amniotic fluid her lungs were weak. But since the beginning I noticed she was never straight when laying or when I put her on my chest, like her hip was always turned to the side. Also, when changing diapers, one of her legs was stiff and it was really difficult to clean her tiny body. They told us to wait, as she was so small and her health was fragile, she must breathe to live, and that was the priority.
Months passed and when she was finally stable enough to see other issues due to her extreme prematurity and unusual pregnancy conditions, they told us her right hip was not right, hip dysplasia was then introduced to us, maybe even scoliosis due to lack of amniotic fluid. At the end it was “only” hip dysplasia and we started with a harness. She was still inpatient, so not that much of her life changed with it.
6 weeks passed by and, although some improvement was made (she could now move her leg and diapers were changed easier) , hip was still not right. That’s when she went through her first hip procedure, a closed reduction. The cast, and all this hip dysplasia life, was new for us, so I searched a group on Facebook to have some other moms just like me, with questions (and answers!). There I learnt some tricks, like double diapers to avoid a smelly cast. I wasn’t able to use all the new wisdom I got from this group, as soon was seen that the closed reduction didn’t work.
After around 6 months, doctors decided to go through an open reduction. This time we already knew about double-diapering and how to keep a 1.5 year old in a cast entertained, everything went well. We were so happy and trying to do everything right. That time, we asked a carpenter to make a spica chair for us, one “like in the pictures”, but it was really odd in shape and too big for her, so we couldn’t use it. Unfortunately, only 3 weeks after, Cecilia entered an emergency procedure to try to get it right as it was dislocated again, it didn’t work.
One and a half year later, the femoral osteotomy was scheduled. I was aware a 12-week cast was ahead of us, she would be 3 years old and we would really need a nice spica chair for her. Again, my Facebook group didn’t disappoint me, I read about “Erin’s chair”. Apparently, there were some people in the UK that would send spica chairs for children who needed them. Not only they were making them, but they were also light and easy to assemble. Problem, we were in Mexico. Solution, writing to them. I wrote, and they told me that they could share with me some plans. Oh, we were so happy! We had it made and so we went to our third cast.
Osteotomy went well, but her hip has “an odd shape”, so bedrest was needed for 6 weeks. And so, 6 weeks passed and good news finally arrived, her body responded really well to surgery. So well that, if her doctor didn’t know that it’s best to keep the cast 6 more weeks, he would have taken that cast right away (his words). Of course the cast stayed, but movement was allowed.
Finally, our spica chair could be used and we’re so happy with it! It’s actually so light and easy to assemble and disassemble, that we move it through our house. Now, Cecilia can play, look through books, paint and so much more. We’re still 5 weeks from getting rid of her cast, but life has become more bearable this way. She’s even in a better mood. This was a game-changer for us, in a really good way. We’re so glad that we wrote to “Erin’s chair” and will always be grateful for the work they do for children like mine.
Written by Marisa, Cecilia´s mum