I couldn't get pregnant. My body didn't work right. They told me if I did get pregnant I may not be able to carry the baby to term. My uterus is deformed, heart shaped, bicornuate, a Texas Longhorn (as Michael calls it). I had an MRI (one of my worst experiences EVER!) to make sure it could handle a pregnancy. I wished for twins knowing that my uterus may not be able to support two lives. It barely did. I feel guilty for that.
My babies were born after 34 weeks of gestation. I couldn't hold them in any longer, not sure I wanted to at the time. There is guilt for that. I fought like hell to breastfeed both of them, I know that is to try to counter some of the guilt of my body not working.
My daughter was born without a fibula, it never grew. Something happened when I was about 6 weeks pregnant. A blood clot, trauma in the limb bud and the leg stopped growing for a time.
What is Fibula Hemimelia? (“Congenital Absence of the Fibula”)
Fibula Hemimelia can also be known as congenital longitudinal deficiency of the fibula. Or, it can be called congenital absence of the fibula. The name depends on the extent of the abnormality. It means that the fibula, one of the two bones between the knee and ankle, has a problem. The fibula is important because it is the bone upon which the muscles of the leg originate. The condition is the most common of limb abnormalities and most often only one leg is affected. The fibula can be totally missing. Or, it can be too small. Males are affected twice as often as females.
Causes of Fibula Hemimelia? What causes the problem with the fibula is not known. In some instances, though, genetics may play a role. Some researchers suggest that the deformity may occur between the second and eight week of fetal development. This is the time when the limb buds start to develop. Environmental factors may contribute to the condition too. Both radiation and insulin production may play roles. Symptoms of Fibula Hemimelia? A leg that is moderate or significantly shorter than the other Abnormal positioning of the knee and/or ankle Ankle and/or knee instability Dimpled skin over the site of the deformity
Treatment of Fibula Hemimelia?
How the condition is treated depends on how severe it is. The goal of treatment is to allow the child to function as easily as possible. Some children may only need a shoe lift. Others may need to use braces or casts. Still others may need surgery to help lengthen the leg. Only in the most severe cases is amputation needed. Amputation may enable the child to learn to walk using a prosthesis. For instance, Aimee Mullins, who was born with the condition, had both legs amputated below the knee before she was one year old. Now in her twenties, she skis, swims, plays softball, runs, and does the long jump. She's a Paralympic runner and a fashion model.
My guilt extends beyond Madeleine. All this time I have been lugging her around on my hip, sleeping with her in my bed, comforting her through stress, petaling her cast, rubbing her legs.
What have I been doing during this time for Max? Oh, I try. I try to give him the same attention but he doesn't fit into this equation. This time is for Madeleine and I have to hope that Max understands.
I felt bad enough tonight that I took a bath with Maxy. Since Madeleine cannot take a bath right now we had to sneak. We crept into the bathroom and turned on the water. Max could hardly contain his enthusiasm! We played and I washed his hair, his pits, his butt. I'm trying to give him individual attention to curb my guilt.
3 comments:
Every mother feels guilt ... I cannot imagine a mother who doesn't. What I can imagine is mother's who don't admit they feel guilt. It sounds like Max had a great time in the bath ... he understands.
You are doing an amazing job. Max is so happy and content and both of your babies are so loved. Every mom feels guilt, especially when in our situations, all the "what ifs" and "why" questions, you did nothing Niki, and just think, with out all these things you wouldnt have MAdeline and Max and they are so perfect, I just love them to pieces. Hang in there, only a couple of weeks now and things will get back to normal soon.
Oh boy do I understand momm's guilt! I have it really bad somedays too. I always worry "am I giving Aiden enough attention, will he be mad someday?" I know brandon will always require special care, I try to make it "even" with extra hugs and playtime. But I know Max understands, he knows that you are the hero mommy that is taking such great care of his best freind and sister! :)
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