Fibular Hemimelia Continued..

Earlier this month, our family of three made a trip to Shriner's Hospital for Children in Salt Lake City, UT, where after much consideration, have decided to have our daughter's surgery for her Fibular Hemimelia. It makes the most sense when it comes to long-term prosthetic fittings, and after speaking with many parents who have taken their child to a Shriner's.

We had been taking Carmen to an orthapedic surgeon in Denver since she was a month of age, and saw her every 5-6 months until she turned a year old. The doctor from Denver spoke with us about our options for surgery and highly recommended doing what's called the Boyd Amputation procedure (amputations are often opted for over lengthening surgery, due to larger differences in length, and for better functionality with a prosthetic), and it seemed like the best option, especially on paper. With a Boyd amputation they would remove the foot, but re-attach the heel bone to the end of the tibia, giving her more length, more residual limb for a prosthetic to fit onto, and it would allow her to bear weight on that leg without a prosthetic. She also said that the healing would be better. The other option that is common with Fibular Hemimelia is what's called the Symes amputation; it's basically the same as the Boyd, but the heel bone is not re-attached. According to the surgeon in Denver, this amputation may not allow for weight bearing as well as the Boyd, and would not provide as much length for prosthetic attachments. At our final appointment with the surgeon in Denver, we discussed our feelings about possibly going to Shriner's, and she said that long-term the "flow" may be better there. After hearing that on top of what he had already been feeling, we made our decision to go to Shriner's for a consultation for surgery.

Before meeting with our surgeon at Shriner's, we were obviously set on having a Boyd amputation done, but after speaking with other families who have a child with Fibular Hemimelia, we came to realize that for some reason, most surgeons opted for the Symes amputation - which really stumped us (no pun intended). I prayed that the surgeons in Salt Lake City would agree to go with the Boyd, and not push the Symes on us. I thought, 'Maybe the Boyd is less common because it requires more work, and surgeons want to keep it simple?'.

At our consultation in Salt Lake, the surgeon did suggest the Symes amputation, and assured us that most surgeons only do the Boyd to preserve length for those children who don't have much, whereas our little Carmen is in the gray zone; meaning that she's just barely too short to qualify for lengthening surgeries, and keeping the heel could in the end be more of a hindrance when it came to prosthetic fittings. The surgeon explained that if a residual limb is too long, it could make it difficult to provide enough space for an ankle component. In other words; Carmen had plenty of length already, and keeping the heel would put her at risk for needing more surgery. When we asked about weight bearing without a prosthetic, she also reassured us that most of those who have had a Symes are weight bearing on that limb, and that every single one of her patients are. This was all very reassuring! Of course, as soon as we got out of our appointment I started reaching out to other families to see what their experiences were with the Symes, and not a single one had a thing to complain about. We did hear from a family who had the Boyd procedure done, but it sounded like it was mostly done to preserve length, as our surgeon at Shriner's had told us. Either way, we know that our daughter is in good hands, and that there are angels looking out for her.

Surgery has been scheduled for Oct. 15th, at Shiner's hospital in Salt Lake City. We anticipate a two day stay in the hospital, and then a post-op checkup 7-10 days after surgery, so we plan to stay in Salt Lake during that time. Carmen will leave the hospital in a cast, and we assume it will be removed during her post-op appointment with the surgeon. She will get her first prosthetic in Salt Lake City in December, when we go for her first fitting and to meet with a physical therapist (we will be there from the 8th-15th). Maybe our little girl will take her first steps just in time for Christmas? It's on my wish list :)

I just want to thank all of you for your support through all of this, whether it be your words of encouragement, or your optimism. I especially would like to thank my family - my in-laws in particular, for helping to make this time go a lot more smoothly for us than it otherwise would have; Carmen is blessed to have all of you in her life, and so am I.

To be continued...

The Five Year Effect

The other day I was thinking about how much my life has changed since I was young, and wondering what piece of advice I would give to myself if I could go back in time to the days of insecurities and confusion, but more than that, advice that I can give to my daughter once she gets there. A few things that I have learned and wished that I had known sooner came to mind, and one of them I still practice today..

When I was younger I used to lay in bed late at night just tearing myself apart for all of the dumb things I had said or done throughout that day or week, and wishing that I could be someone else. After a few years and a lot of hours of sleep were taken off my life, I knew that I needed to find a reasonable solution. Surely I wasn't the only one that felt this way, and yet, I couldn't think of a person worse than myself; my first 'ah hah' moment! The fact that I didn't remember every dumb or thoughtless thing others had said or done, probably meant that others didn't either. Then, I began a practice that I call 'The Five Year Effect'. I would start off by asking myself, "Will it matter two weeks from now?", to "Will it matter two months from now?", etc, all the way to five years. Once it got to five years and if it still mattered, then I knew action would need to be taken, and possibly some advice sought.

Whether it be wishing that I had done more for friends or family members that are no longer in my life as much as they used to be, said 'I love you' more to those who have passed on, or could take back hurtful things that I have unintentionally, or thoughtlessly said or done to others; I have my regrets. So what to do in situations like this?

Aside from 'The Five Year Effect', the only conclusion I have come to is that we must, first: remind ourselves that no one is perfect (aside from Jesus, of course), and then second: come to grips with the fact that sometimes good people can be the villain in other people's life stories (we've all seen or heard of 'Wicked', right?!), but still say sorry when possible or appropriate, and third: live the AA mantra, "God, grant me the serenity to accept the things I cannot change, The courage to change the things I can, And the wisdom to know the difference." Amen! 

So before you keep yourself up at night, just remember that no one is perfect, we are all our worst critics, and to only worry about the things that can be changed, but then realize that they can still be changed; change them, and stop worrying!! The fact that we notice the shortcomings of who we were today already speaks volumes about who we will be tomorrow (hopefully *fingers crossed*). 

Fibular Hemimelia and The Five Stages of Grief

The day after our baby's 20 week ultrasound, I found a new voicemail on my phone from the doctor's office. My heart sank as I listened to the doctor's voice saying that when reviewing the ultrasound pictures, he was having a hard time finding a bone in the left lower leg; the fibula. He said not to worry, that he would just send us to a high-risk specialist in Denver to recheck that leg. I immediately knew that something was wrong as I remembered the ultrasound tech and her student desperately trying to get pictures of that lower leg. Of course, the techs are not allowed to tell you anything other than the gender of a baby. As a nurse, I also knew that if it was just a bad picture, they wouldn't send us all the way to a high-risk specialist in Denver.

And so began my five stages of grief..My thoughts were as follows (These are unfiltered ugly emotions, and thoughts that I am almost embarrassed to share, but I share them anyway in hopes that others who go through similar situations and emotions will be more forgiving of themselves)..

Denial. These sort of mistakes happen all the time with ultrasounds, right? I mean how can you possibly be sure of such shadowy images of a moving baby anyways? It was a student taking our images, she must have missed something..

Anger. Why in the world would God do this to my baby?? Was it caused by the trauma that I went through after falling on a slippery driveway at work?? Was this all because some idiot didn't shovel their driveway?! 

Bargaining/Denial. God wouldn't let this happen to my child. After working with special needs children as a nurse, surely God wouldn't allow something like this to happen, after all my service to children with disabilities. Of all people, I deserve a perfectly normal baby. 

Depression. This is my fault. I did something that caused this to happen to my baby. Was it the trauma that was caused after my fall at work, due to my clumsiness?? Was it the X-ray that was taken before I knew I was pregnant? Was it the pain killers?? How could I be so careless?..

And then the final and most important phase..

 Acceptance. This didn't happen all at once. It was, and still is, a process. The day that my husband and I went to Denver, we didn't find out that it was a mistake with the ultrasound, and that our daughter had a fully functional leg. Instead, our fears were confirmed.  She had a missing fibula and a missing metatarsal, along with a shortened and bowing tibia. This meant that she had Fibular Hemimelia; a term that we had become very familiar with through our own research, in the long week before our appointment..

According to Wikipedia, Fibular Hemimelia (also known as fibular longitudinal deficiency), is "the congenital absence of the fibula and it is the most common congenital absence of long bone of the extremities."^[1] It is the shortening of the fibula at birth, or the complete lack thereof. In humans, the disorder can be noted by ultrasound in utero to prepare for amputation after birth or complex bone lengthening surgery. The amputation usually takes place at 6-months with removal of portions of the legs to prepare them for prosthetic use. The other treatments which include repeated corrective osteotomies and leg-lengthening surgery are costly and associated with residual deformity.^[2]"  

Since then, our family has been blessed to know of many people who have overcome this (Oscar Pistorius, who competed in the Olympics this past year, for instance). In our daughter's case, it has been determined that amputation of her left lower leg, at about one year of age, is the best option for her to have full functionality with a prosthetic. I understand it will be hard, but I know that my daughter is strong enough to handle it. My husband and I have become very open about our daughter's leg, as we would hope that she will be. There are times when I think of the day that she will be wheeled away on a hospital bed and hooked to tubes of all sorts while she lays there unaware of what is to come, and I struggle. When this happens, I remind myself that she will one day run track if she wants to, or be on her high school volley ball team, and all this would be possible because of that day.

I was talking to a wonderful woman not too long ago who had a child with difficulties herself, and she said that she found it funny when people would commend her on being so strong. She said that the truth is, she didn't have a choice. It's true. When you love your child, there is no choice but to help them, and to accept what is to come. I don't think that God let this happen because I was strong enough to handle it, but because my daughter is. This is not so much a trial for me, as it is for my daughter. I hope that I will always be able to be an example to her when it comes to persistence and determination to reach life goals.

Carmen Royce was born 8/29/12. She is the most beautiful thing I have ever seen. She has all ten fingers and nine toes, and brings me joy everyday. Turns out, God had reached perfection before he was able to finish her left leg, and we'll be reminding her of that for the rest of our lives.

I am truly grateful to have the opportunity to raise such an amazing spirit, and to be inspired by her daily. I really feel as though I have grown as a person because of her, and hope that I will continue to do so.

This journey has only just begun for our family, but if you have found your family in a similar situation, I hope that this post, as well as future posts will help reassure you of the sunshine after the rain. God bless.