More messages from other parents..

I love this message. It goes to show the diversity of the parents whose children face this condition. Whatever your religion or cultural background is, we can all relate to how it feels to love a child with physical challenges.

Hi, First when I saw my son coming out with such conditions.. I almost fented.. but couldn't act wild cse did not want shock my wife.. my son is having both hands and legs with three fingers and three toes with close left ear.. I was blaming my wife for watching aliens movies and ET.. but as a muslim, I had to accept that is a allah giving and creature. . Can't complain neither blame anybody.. just was praying for a good and healthy growth and brain.. now he is almost 3 years.. adam can walk can run lile a crazy and can grab things strangely but he can. Talking not yet start. . Im following and doing check up every mow and then.. please send me the FB page address.. mine is chalghoumi@gmail.com.. Waiting for your kind reply.. regards. Allah bless everyone


Thank you so much for sharing your story. I too believe that God (or Allah) is a loving and generous being. I too believe that he has a very divine and special purpose in sending our child to us with these physical challenges. A mother whose child has Down's syndrome once told me that God only sends special children to special people. I know that one of the reasons God (Allah) sends our children this way is to help us grow our faith in him. I cannot look into my son's happy and smiling face without thinking of God's love for him and us. I cannot watch my son do something new like climb stairs or pick something up with his two fingers, and not feel amazed in God's ability to help my child overcome his challenges. It gives me faith in God's plan for my son. God knows what he is doing, even if I don't.

You mentioned in your email that you had feelings of blame when you first discovered your child's condition. I think this has to be a natural and universal feeling for most parents of children with disabilities. In my dark moments, sometimes I blame myself for my son's limb deformities. I ask myself, did I do something wrong when I was pregnant? Did I not take the right vitamins? Did I expose myself to some toxin? Did I eat too much bacon in my first trimester? and so on. But then I think of my pregnancy with my first son. I was young during his pregnancy and I didn't do anything I was suppose to do. I didn't take any prenatal vitamins, I didn't eat right, I didn't exercise, and I rarely followed my doctor's instructions. That baby came out perfectly healthy with no problems. In my pregnancy with Brodie, I did everything right. I took the prenatals, I ate healthy and I followed my Doctor's instruction explicitly. Hell, I even did prenatal yoga. But that baby came out with birth defects.

I think the truth is that we really have only limited control over how our babies come to us. I've seen women strung out on street drugs have perfectly healthy children. I watch a show on TV where women don't even know they're pregnant (they smoke and drink alcohol and never see the doctor) and suddenly give birth to healthy babies on the bathroom floor or in a toilet. Yet two very healthy parents, with perfect genetic and family backgrounds, who take every precaution, still have babies with problems.

Reality is, having a baby is a lot like playing Russian Roulette. You get what you get and there are never any guarantees. This is one of the reasons why I think God has purpose and a plan to giving us our children this way. God chooses what kind of a child you have. So you can take all the prenatal vitamins in the world and eat vegetables until you throw up, it doesn't make that much of a difference because only God has true control over how your baby comes to you. You just have to have a little faith.

After all, we are all born with challenges in our lives. Some challenges are just a little bit more easier for others to see.

Emails....

I get emails and messages from parents all over the world who have children with similar conditions to my child. I love getting these messages, it is always nice to know you are not alone. Here is one example of a message I got and my response. I changed some of the info on the oringinal message to protect the other mom's privacy.


Hi, We don't know each other but I saw your son on the Ectrodactyly page on Facebook. My son was born with his leg almost the same as your sons. I was wondering if there's any advice you could give me since your currently going though the same thing I am? Thanks so much!!


My Response:

Hi! Thanks so much for writing me. It always helps to know that you are not alone in this situation. We are still waiting to have our baby's surgery, the first time we attempted it, it was canceled because he was wheezing at the pre-op appointment (he has asthma and he is prone to respiratory infections). But its amazing how mobile he is, even with his legs the way they are. He climbs on everything, he can even go up and down stairs! :-)

The best advice I can give you now is to shop around for your orthopedic surgeon. Don't be afraid to get a second opinion and even a third or forth opinion. Don't take their surgical plans at face value. You only get one shot to do this surgery so you really want to feel confident that its the right surgical plan for your child.

The first surgeon we saw took one look at our child, threw his hands in the air and backed out of the room while saying he needed to refer us to someone else because he on really deals with fractures. The second surgeon we saw was the head of the pediatric orthopedic unit at Phoenix childrens hospital. He was rude and condescending and didn't really do a good job answering our questions. Like you, this doctor told us that the knee on my sons right leg was unsalvageable and he would have to do an above the knee amputation. He also wanted to do surgery on Brodie's left leg to fuse the tibia and fibula together as they are not connected. We didn't choose him because we didn't feel comfortable with him, but we took his surgery plan at face value and assumed that this is what any surgeon would need to do for Brodie.

When we moved to omaha shortly after that, we saw our third surgeon who was the head of pediatric orthopedics for the omaha childrens hospital. This doctor referred us to a surgeon at shriner's hospital in minnesota named Dr. Krandall. Apparently this guy is a world class specialist in amputations for children and he felt that he would be the best choice for Brodie. This doctor at Shriners had a completely different surgical plan in mind, which really surprised me. He felt that he could save the knee on Brodies right leg and do a below-the-knee amputation instead. As you probably know, going below the knee can make a huge difference in their ability to walk and move later on. This doctor also felt that doing surgery on the right leg was unnecessary (less surgery, yeah!). What's important is that this new doctor was willing to take a different approach and at least try to save some functionality in that leg. Even if they end up having to go above the knee, at least we tried, you know?

I guess my point is, you only get one shot at this surgery so don't be afraid to shop around and find the doctor you feel the most comfortable with and that you feel has the best plan for your child. You are not going to hurt your doctor's feelings by getting another opinion. It might surprise you to see how different the plans of each surgeon are. This way you will know what all of your options are before you take such an important, life-changing step for your baby. I'm glad you wrote, I hope we can stay in touch. Our children's conditions are pretty rare, so its nice to find someone out there in the world who can relate. :-)