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.
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.
