Update – 1 Week until Surgery

Standard

Updates for Thursday, March 8th 2012

Thank you all for your continued prayers!

This past Monday and Tuesday Cristina and Maria Isabella were evaluated at the Children’s Hospital of Philadelphia(CHOP) to see if they qualified as candidates for the pre-natal, in-utero surgery at the Center for Fetal Diagnosis and Treatment, which was pioneered by the Doctors at CHOP more than 16 years ago.

See link for the 12-part mini-documentary about the surgery, DEF worth the watch…it’s just plain incredible what these people are doing!(Make sure to click each chapter on the right when each video clip finishes)  –  http://www.chop.edu/video/fetal-surgery/spina-bifida-video.html

Monday was full of 2-3 hour long ultrasounds/sonograms and MRI’s of Maria Isabella, as well as an overall evaluation of Cristina’s body and medical history. The criteria that must be met is quite specific and this team takes this part very seriously, as they desire very healthy babies just as much as healthy mothers.

After meeting with the entire pioneering surgical team AND the actual pioneer himself, Dr. Scott Adzick MD, we were given the 1-2 hour long presentation on Spina Bifida – what it means for the child and also what it means for the parents/family of that child, from the moment they are born to the different stages of development. We didn’t quite realize just how much of a big deal it really is.

Following the basic presentation on Spina Bifida and what it may or may not mean for little Maria Isabella, the crew gave us a crash-course on the actual surgery, repeating more than 5 times – “This is a REALLY BIG deal.” As with any case of Spina Bifida where the actual defect is seen visibly and the spinal cord has been exposed, the typical treatment is very common and most doctor’s are trained at almost every hospital, all around the world – deliver the child and immediately operate on their back, slightly easing the exposed and possibly deformed shape of the spinal cord back into it’s *normal* position within the spinal column and sew the back-up, helping to protect the child’s cord from any further damage.

Dr. Adzick thought there was another way to do this and he began working on animals – sheep and monkey fetuses – within the womb,at a little over halfway through gestation, and studied the results.  Through those years of experimenting,  he discovered that if surgery was performed on the fetuses with back defects (much like Spina Bifida) BEFORE they were delivered, they had a much higher rate of preventing any further damage or loss of mobility, as seen in the fetuses that were operated on after birth. Note that there is no cure, but more benefits in preventing further damage to the spinal cord.

This is where the MOMs (Management of Myelomeningocele or ‘Spina Bifida’ Experiments) took place. 183 participants enrolled and were completely randomized. Half of the women underwent pre-natal surgery while the other half had the children delivered at 9 months and had the typical post-birth surgery. The study reported SIGNIFICANTLY improved outcomes for the children who received the pre-natal surgery versus those who were operated after birth at 9 months.

In fact, the results were the following for those who received the prenatal surgery:

-Reduced need for ventricular shunting (measured at 12 months of age)

-Reduced incidence of severity of neurological effects, such as impaired motor and sensory function of the legs

-Reversal of the hindbrain herniation (typical in Spina Bifida)

So the benefits are obvious. But the fact of the matter is that this surgery is quite serious…and doesn’t come without it’s serious risks. In the hundreds of surgeries that they have performed in the past 16 years, they have lost a child during surgery…..although one of the greatest and most increased risks from this surgery is the woman going in to pre-term labor. This varies in severity – from days/weeks after the surgery, resulting in most cases, the death of the pre-term born child.

Now to the prayer requests.

Cristina and I are set to travel to Philadelphia on Monday (the 12th) for our first pre-op exams all-day on Tuesday. They have to do a quite strenuous evaluation (again) on Cristina’s heart/lungs/overall health, as well as Maria Isabella’s heart and her position in the womb. After a team meeting with the same team who pioneered the surgery and who performed this specific surgery (no stand-ins!) on Tuesday evening, we need to get to bed early because the operation begins at 5:30AM on Wednesday. Pray for the health of the doctors/surgeons performing, as well as all of the medicines – that everyone may be like pencils in God’s hands.

After the surgery – Cristina will be recovering in CHOP until Sunday/Monday (4-5 days) and then be discharged to her more permanent residence for the following 3-4 months in Philadelphia. We trust that He will provide everything along the way, but I would ask that you pray for this aspect of our journey as well. Please pray that an affordable residency is provided, as well as a location that will allow me to travel from work in New York City to Philadelphia (we don’t have cars!) at a somewhat affordable rate.  I’m trying to work something out with my job here in NY so that I will only lose out of the least amount of days of work possible  (and money to pay bills/transportation/hotels if needed!!!) for the next 3-4 months.

We will update everyone in our prayer-chains as the days progress….trusting in His Providence throughout this whole process.

Thank you again for your prayers  and may God bless you!

Andrew (and Cristina and Maria Isabella)

20 week – smile!

8 responses »

  1. i will definitely pray for all 3 of you, Don’t worry with the grace of God everything will be just fine. && it will not be the doctor doing the surgery it will be Jesus Christ and the nurse will be Virgin Mary. All the best. . . <3 i will be praying to my Virgensita de Guadalupe for your family.

    ( If you're wondering how I know about your situation with Maria Isabella, I was at the pre-cana on March 3rd with my fiancee Juan Carlos) :) . . .

  2. Pomagashu mi. Ibsn’né ja shu nebo!
    May the Right Hand of the Lord, so big that it covers the stars of heaven
    Embrace you and protect you all… from now and forever!

  3. I actually know a few parents of kids with spina bifida as well as had a classmate with it. I never cease to be amazed at what they can do now that they couldn’t do 16 years ago (when the youngest of the spina bifida kids that I know was born).

    Prayers ascending…

  4. Hello there,
    A friend, Missy Farber, sent me a link to this post asking me to please pray for you because she knew that we were connected to CHOP as well. I quickly realized that you will operated on by the wonderful Dr. Adzick. He is also my daughter’s surgeon (my daughter had an Annular Pancreas and had corrective surgery on 10/20/10). He is wonderful, his staff is wonderful, and the entire of CHOP hospital, in our experiences there, are wonderful. I will be praying for you but I hope you are at peace knowing you will be receiving such outstanding care with Dr. Adzick.

    God Bless
    Jamie

  5. God Bless you all! I know firsthand what a stressful time it must be for you as my husband and I went through this ourselves with our beautiful baby, Lourdes. We opted to not pursue the pre-natal surgery, but it was a very difficult decision for us to make. Then again, when I was pregnant with Lourdes (2010), they were supposedly just finishing up the MOMS research. We were told that we could relocate to Philadelphia, but may not even be chosen as part of the “test” group. So, because of Lourdes’ lesion was sacral level and she had energetic leg movement, we decided to delay surgery until after birth. Lourdes is 17 months old now and she is doing VERY WELL. To digress a bit, I’m not sure how I stumbled onto your blog, but once I read about your family, I wanted to let you know that the pregnancy is the most difficult part … with the waiting … the anxiety, etc. But, once you look into your baby’s eyes, everything will fall into place. Lourdes is not yet walking, but her neurosurgeons and orthopedists say that she will (besides, our perfectly formed 12-year-old, Isabella, didn’t walk until she was 18.5 months anyway!). Other than the initial stress of surgeries at birth, we find that Lourdes is more like “normal” babies than not. Plus, she is very strong willed, intelligent and cute for miles. If you ever have any questions or would like to see photos – we’re glad to share with you what we’ve learned. We are sending you prayers for a successful surgery. It really is miraculous that they can do this for these tiny ones. From everything that I’ve read on myelomeningocele (yes, lots of research), I feel fortunate that if our sweet girl had to be born with this challenge, at least she was born in this time when they can now do so much more to “normalize” the lives of these children than they could ten years ago! Take heart! :-)

  6. Marcus & Laura Croft are praying for the Pocta’s! Thank you for sharing your remarkable Faith & surrender to God! We’ll be lifting up Cristinia & Maria Isabella all week. We’ll be sure to pray that all the logistics {cars, travel, residency, work} work out perfectly. God bless you all…

  7. Pingback: 6 Week Update (and ultrasound videos)!!! « 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