Monday, March 19, 2012

Learn, Learn, Learn!

Well, now you know in which circumstances Isabelli was born, and maybe your story is really similar to ours. So, for us, after finding out about all our baby's conditions, it was time to learn and understand them, so that we could raise our daughter to the best of our abilities. I sat myself in front of the computer and "googled" everything in the subject. So, here I'll give you a summary of each condition and provide you with links that will help you learn more.

AMNIOTIC BAND SYNDROME (ABS)

The process occurs very early into pregnancy (around the 14th week), when a rupture in the amniotic sac happens, releasing fibrous string-like bands that get attached to the baby. It is most common to affect the limbs (arms and legs), constricting their growth or amputating them. It can also affect the skull, cause cleft lip/palate, scoliosis and other abnormalities. In worse cases, causes miscarriages.

According to studies, and the doctors we have spoken to, studies haven't yet been able to link anything in particular that may cause this problem. I just happens. Of course that the use of drugs and exposure to chemicals may add to the risk. But, for example, in case of moms that had a healthy pregnancy with all the cares and vitamins (like me), there is just no explanation at all.

If your baby was born with this condition, he or she is 1 in approx. 1200 kids!

Here are the before and after surgery pictures of my daughter's hand. This first surgery was mainly to release the syndactyly (which is the webbing of fingers - you'll learn more about it next) between her fingers.

My daughter was born with 3 developed fingers and two that are undeveloped (little and don't have bones). The little ones were webbed to the fingers next to them. You can also notice the extra skin over her 4th finger, looking like a little ball. That and all the extra skin on her fingers will be removed on her next surgery, scheduled for the middle of the year.

SYNDACTYLY

As I have just mentioned, syndactyly and polydactyly is the webbing of fingers or toes. They can be connected by just skin, or be more complex, being joint by nerves, blood vessels, bones or nails. When it does not affect function or development, your child has great chances of living very well with it and he/she might have a cosmetic surgery if wanted. But for the complicated cases, the surgery will be corrective.

Some link on ABS, syndactyly and other hand differences that you might like can be found on the right hand menu o this blog, under the EDUCATE YOURSELF tab.


CLUBFOOT (CLUBFEET)

Let's now talk about my baby's little feet. They were totally twisted to the inside (the right foot even more so).  Clubfoot is when the bones, joints, muscles or blood vessels of the  foot are incorrectly formed. It can affect one or both feet. (You can learn more by checking out the links on Clubfoot here on the right hand menu on the blog)

The best process used to treat clubfoot is the Ponseti method. My daughter started treatment at 4 weeks old. The process consists of casts that are put on the baby's whole leg, that are changed every week, and  every time they are changed, the doctor moves the baby's foot closer to the right position. The change is very noticeable and fast, once the baby's bones are cartilage-like and are much more flexible than our bones, for example. That's why treatment has to start in the first month of life of the baby.

Isabelli had the casts done for about 6 weeks and had her first surgery on the 7th. After surgery she stayed with casts until the 10th week. After that she started using removable braces (we take it out just to bathe her), but she still has to wear them 24/7. At night she has to use some extra braces that go on the top of the ones she already has, and those braces have a bar between them, forcing her feet to face outward, preventing the feet to come back to the inside.

Here are some before and after pictures:

 And here are some pictures of her using the casts:

Now, Isabelli is 15 months-old and has just started walking!!! We are extremely happy and grateful to God and to her amazing doctor. Here is a video of her walking:




Well, I hope I have help you understand a little better these conditions. I'll keep on posting things regarding these subjects and I will share with you our trials and victories!

Blessings!

2 comments:

  1. Oh, Brenda, this is so helpful. I am so glad you are doing this!

    ReplyDelete