Spina Bifida and CHOP

Standard

While some of you all know about Spina Bifida, (or someone who has had the same diagnosis or someone who lives with it) Cristina and I had no prior knowledge about what this all meant.

Just to fill everyone in, here’s a little breakdown of this not-so uncommon (although most of the babies don’t make it past the initial diagnosis, sadly) birth “defect”, courtesy of a Doctor in Philadelphia and now someone Cristina and I call friend:

Spina Bifida is the most common birth defects of the central nervous system – about 1500 babies are born in the US with this diagnoses each year.
Another name for spina bifida is myelomeningocele. The cause remains unknown. This condition involves a portion of the bony (vertebral) spinal column which during the baby’s development in the womb does not close entirely. The spinal column is important in protecting the spinal cord. When the posterior of the vertebral spinal column does not entirely close there is a hole or defect in the bone of the spinal column – because of this the spinal cord which is made up of nerves can be injured – the nerves that can get injured are those which are important for moving the legs and also bowel and bladder control. The nerves become injured later in pregnancy and during birth.

Now you can see where the initial “freak out” comes from.

There is good news though. First and foremost, a diagnosis like this isn’t the end of the story. Without even realizing it, I was reminded that my childhood babysitter was born with severe Spina Bifida. Say what?!?! For years she babysat 4 crazy kids, drives a car, has degrees from college and lives in her own apartment! (looking back, we were probably a little too hard on her when it was time to put us to bed)

Obviously, no matter what the culture of death is telling us on “quality of life”, we haven’t learned.

Even more hopeful is the next piece of information that we were given following the threat my eyes sent the doctor at the sound of “….end the pregnancy” :

The Children’s Hospital of Philadelphia or CHOP was one of a handful of centers in the world who participated in a long term study – over 7 years looking at the effectiveness of performing prenatal surgery for spinal bifida. That is – they compared outcomes in two groups – those children who were operated on in the womb ( in-utero) and those with spina bifida that had the surgery performed after birth.  The results of the study were very encouraging – they followed both groups for several years – those that received the surgery in the womb were better able to walk, had better motor function and were less likely to develop hydrocephalus which requires a tube to be inserted internally from the brain to the abdomen region to shunt the cerebrospinal fluid from the brain to the peritoneal area to make sure fluid does not build up in the brain.
So, the children who had the prenatal surgery were less likely to require an operation to insert the shunt.

In fact the results were so significant as the study proceeded that they stopped the study early  because the results were clearly in favor of the prenatal surgery and they felt it was not fair not to recommend the option for prenatal surgery to all who the diagnosis of spina bifida is made. At this point – the option for surgery is now considered the standard of care for the diagnoses of spina bifida. It is important to note that this is not a cure – but the study shows with scientific evidence that with the prenatal surgery the outcomes for children with spina bifida are much improved in all area measured.

To sum it up – The Children’s Hospital of Philadelphia is one of the top places in the world for this condition.
They have an entire team – multidisciplinary – including pediatric surgeons , nursing staff, social workers etc. all of whom have experience and expertise in caring for the children with this condition and also assisting the families of the children in all aspects ranging from insurance issues to discharge planning and follow up.

WOW! With all of this information…..and Philadelphia so close to us……why would they even push the previous option on us?!

“He will never give us anything we can’t handle” echoes in the back of our minds daily.

Our next step is preparing ourselves for a consultation with CHOP on March 5th and 6th. Our prayers are for God to open the doors, whether or not His Will is for us to undergo surgery of Cristina and little Maria Isabella, or whether God has a greater plan independent of this in-utero surgery. Maria Isabella already is our little miracle….so although we do pray and trust in God’s Power to perform a miracle on her little back, we know that if that is not the end result, we are carrying a miracle daily within Cristina’s womb.

One thing is for sure, we are not in control right now. I can honestly say that more than ever before – and I speak for both of us – we have never felt so out-of-control in a situation.

Is it hard? Yes. Are we still riding the roller-coaster of emotions, daily? Yes. Are we tempted to give up or to cry out or to wish it all away? Yes! But this is not what defines us or defines our lives. We choose -in the midst of all the doubt or denial or even “illogical” decision to continue on – to place our Trust in Him and His Will…even if it’s hard….even if it takes everything out of us.

Last but not least is a little miracle that we want to share with you – something that God has already begun revealing to us in reference to our daughter’s mission in this world.

Last week immediately following the initial diagnosis of Maria Isabella, we were asked by our parish priest to contact another women who was under constant harassment by her doctors for her to pursue an “quick fix” to her baby’s “problem”. The doctors had given her a harsh diagnosis of not only a birth defect, but of guaranteed retardation and “surely, intense daily seizures during the life of her child, if allowed to be born“. Obviously, having found ourselves in a similiar situation, we reached out to her but received no response. (Later to find out that this was most likely due to fear/shame of the situation)

This past sunday, guess who shows up to mass to receive a special blessing for her and her baby? The same young woman – mother of 3 beautiful children and now in a situation where her doctor had even told her that she was “….being selfish for even wanting to bring a child like this into this world”

After talking and sharing with her, guess what her diagnosis was? Spina Bifida. Retardation?! Guaranteed lifelong seizures?!

While Spina Bifida (in it’s most extreme and severe cases) can carry with it these crosses, it is in no way a guarantee or even the case with the majority of children born with this defect.

Obviously this doctor had another agenda…..and because she was a combination of Hispanic as well as a recipient of Government HealthCare, it seems that the potential financial burden of a child like this, wouldn’t be worth it.

Long story short, by the Grace of God (and Maria Isabella’s mission, for now at least) we were able to meet up with her and her entire family. After discussing with her the situation and  shedding light on the whole story of Spina Bifida, we were able to bring her to meet with the Sisters of Life (which also happen to be the Directors of my office!) and get her on the path of a new doctor and an entirely new medical support group for the next part of her journey.  Praise God!

Thank you, Lord for these miracle children! May we, as parents, have the Grace and Strength to embrace these lives, all for Your Greater Glory!

Please keep us in your prayers!

In Christ,

Andrew, Cristina and little Maria Isabella Pocta

4 responses »

  1. WOW, Maria Isabella is a missionary from the womb!!

    I’m praying for you three! And this other family! It is so encouraging to read about Maria Isabella’s options for a great, healthy life! God bless you all. Yes, He will not give you more than you can handle. You have a whole community, here and other places, supporting you!

  2. Pingback: Spina Bifida and CHOP | Faces of Spina Bifida

  3. Pingback: All Saints | Cafe con Leche

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s