Tag: Amniotic Band Syndrome

Amniotic Band Syndrome/

How is the prosthetic journey so far?

My first prosthesis

We are fairly new to this adventure (just a little over one year) but here is what I’ve learn so far or how I can encourage someone just starting on the prosthesis journey. 

Before the big day, there was so much apprehension of the unknown.

I knew shortly before she was discharged from the NICU that my daughter would have to be assess by a prosthetist to have the process started once she was about 1year old. 

The year leading up to it, I was always wondering about if and when she would be able to walk. But I guess as a parent you always worry about milestones; how will your child grow and be independent. I now know that independence means something different for each child at a different age. 

Appointment day… 

Bring a lot of snacks and entertainment. This appointment was quite long since there was a lot of talking by the specialist present. It was a lot about getting to know my daughter. In the room that day we had, a developmental pediatrician, a physiotherapist, an occupational therapist and the prosthetist. Each of them was involve in the conversation however, the prosthetist and physiotherapist were the one that were more relevant to me at that moment.  I got a run-down of all the steps and some of the expectations.

Bring a notepad with questions and space to write. I like to write on a piece of paper but if you prefer you can always use your phone. I did go in there with my list of questions. I had previously done an online research so I had some things that I needed clarity on. 

Don’t sweat it too much. Yes, it was a big day for us but I felt it was just another appointment in our list since my princess left the NICU. The “vibe” felt the same. It was a bunch of specialists giving us their input, asking questions about her etc… It was pretty straight forward, long and in all honesty quiet boring. 

Takeaways…

My biggest takeaways so far are that this journey is really a marathon not a sprint. There will be some expectations as with anything involving our kids. Looking back, I could have just gotten there with a blank slate and less expectation. Having a prosthesis doesn’t mean that your child will walk right away even with a few months. It’s still a process and it all depends on their readiness. 

In the beginning, my daughter could not even look at that leg. She was literally scared of it. But withing 3-4 days she was fine with. I just included in her little play area so she could see that it could be a “toy”. It did take some time for her to ask me to wear and see that this helped her stand on her feet. Toddler really have a mind of their own. 

Don’t forget, it’s really not a sprint, it’s a marathon. 

Amniotic Band Syndrome/

A quick guide on amniotic band syndrome

What is amniotic band syndrome?

Pexels

According to the John Hopkins Medicine, amniotic band syndrome “can occur when the inner layer of the placenta, called the amnion, is damaged during pregnancy. If this happens, thin strands of tissue (amniotic bands) form inside the amnion. These fiber-like bands tangle around the developing fetus, restricting blood flow, thus affecting the growth of certain body parts. This can cause congenital deformities of limbs. In some cases, strands can tangle so tightly around the limbs of a fetus that they amputate them. Amniotic band syndrome is usually diagnosed at birth, but can sometimes be detected in the womb by ultrasound”.

In my daughter’s case it was first discovered during my 19th week ultrasound. As mentioned above the congenital deformities can take different forms. For our princess, she was born without a left foot below the knee. She also has two fused toes on her right leg and her three middle fingers on her right hand are fused and shorter. Which means that she only has a thumb and pinky that are full size.

How common is amniotic band syndrome?

Amniotic band syndrome affects about 1 out of every 1,200 to 15,000 live births. Doctors think it happens in the hand/fingers more often than in the foot/toes. 

Can it be “prevented”?

No, the exact cause of amniotic band syndrome is unknown. The exact reason that the amniotic sac tears or ruptures is not always known and researchers believe that it may happen as a random occurrence. However, there are some theories out there. 

What treatments are available?

pixabay

This depends on the type of deformity there is. In some cases, it is possible to have a utero fetal surgery where the doctors try to release constriction caused by the amniotic band before it can cause further damage. The success of fetal surgery depends on the degree of damage that has been caused by the amniotic band.  

Treatment after birth consists of plastic and reconstructive surgery, followed by physical and occupational therapy as required by the type of deformity. Prosthetics may also be recommended for children suffering from loss of limbs or limb functionality. 

In our case, my daughter has syndactyly because of it, which means that she has some fused fingers together. In this case, there is the possibility of plastic surgery to separate the fingers if necessary, for the child hand function. 

For her foot, the prosthetic is what is helping her walk and do all the activities a toddler her age does. 

On my next post, I will be taking yoou to our prosthetic journey thus far.

Amniotic Band Syndrome/

The ultrasound that changed my life

Pexels by Daniel Danilyuk

March 4, 2019,

This was supposed to be an exciting day, I was going to have an ultrasound to know the gender of my baby. 

The day started like any other for me. I had taken a day off work to be able to attend my appointment. The ultrasound technician, was quite talkative so we were having a conversation just before starting.

As she was examining me, she seemed very quiet and by the look on her face I could tell that something was concerning. 

I was looking at the screen myself but to be honest I couldn’t really understand what I was seeing.  I was 19 weeks pregnant at that time, with an uneventful pregnancy except for common food aversions and nausea.

As some of you may know, ultrasound technicians are no supposed to tell you what they see on the screen, it needs to be confirmed by a doctor. When the doctor came in the room, she told me that on the ultrasound they were not seeing the babies’ left foot and that they could not see 5 fingers on her right hand and also that her spine seemed not fully closed or developed. 

Photo by Maurício Mascaro from Pexels

In all honesty, at that point it’s all a blur, I don’t remember what I tough, if I cried or was just motionless.

The next thing I remember is the doctor telling me that my assigned OBGYN was in the clinic at the moment and he would see me and talk to me. I have to mention that this was my first appointment with my OBGYN and this man will forever have a place in my heart. He talked with so much care, softness. He immediately said that he was going to call one of the lead Geneticist at another hospital so that he could elaborate on the findings and follow me as well from then on. He made the call right in front of me while I was in his office. I was booked to see the geneticist two days later. 

The geneticist was so compassionate and understanding of all my emotions throughout the whole process. He explained to me the findings and scheduled me several other ultrasounds to confirm again what they were seeing. He even called me one day on a Sunday afternoon to know how I was doing. The outcome of all the tests was still the same. He was able to tell me that he believed that my daughter had amniotic band syndrome and possibly spina bifida. 

As the pregnancy progress, let me tell you it was NOT easy, I shed a lot of tears, thinking about my daughter’s future, I relied on my family for support, I prayed like never before and this was the only things that really gave me some solace and kept me going. 

The journey was just starting. 

In my next post I will be elaborating more on amniotic band syndrome and what this meant for us.