Baby Harper's Spina Bifida Surgery

Our Story

Hi guys! We are the Comparin family.  We are the proud parents of a very healthy and active 22-month old son, Kellan, and are very excited about our growing family.

My 18 week appointment was supposed to be a routine prenatal visit with an ultrasound to find out the gender of our baby. During the ultrasound, not only did we found out we were having a girl, but the sonographer repeatedly made comments about how she was having a hard time getting a good photo of the baby’s brain.  I didn’t think anything of it because our little cutie was quite squirmy during the ultrasound.  Once in the office with my doctor, I found out that there was indeed an issue with the baby’s brain.  All they could tell me was that the cerebellum, which is the back part of the brain that controls balance and the use of muscles, appeared to be abnormally shaped. Therefore, I would need to visit a maternal fetal specialist to find out what exactly was going on with our baby.

The very next day I visited the specialist, and had another ultrasound.  As the sonographer captured photos of our baby girl, I noticed that she was spending a lot of time on the spine and taking a lot of measurements.  Not quite sure what was going on, I had to lie there and patiently wait another hour before I would actually meet with the specialist.  When the specialist came in, he asked me if he could hold my hand: that was when he told me that our baby suffered from Myelomeningocele Spina Bifida (open Spina Bifida).  The specialist then informed me that Spina Bifida occurs in approximately 1 in 1,000 births and is a major birth defect of the spine that occurs when the baby’s spine fails to fully form during early pregnancy, and in her case leaving her spinal cords and nerves exposed.  He also explained that the severity of the problems are often dependent on the location of the lesion along the spinal column, and might cause disabilities that range from difficulty walking to complete paralysis and possible loss of bladder and bowel function.  In addition to being told our baby has Spina Bifida, the specialist also told me that she has “Arnold Chiari II Malformation”, which is a condition where the cerebellum is pulled downwards into the spinal canal (a common issue present with babies who have Spina Bifida).  The malformed cerebellum blocks fluid from exiting her brain, causing a condition called hydrocephalus (excessive fluid in the brain).  Hydrocephalus can cause issues in hand-eye coordination, cognition, balance, etc.    

The specialist informed me of the three options available to us - either carry the baby to full term and immediately send our baby into surgery following birth to fix her back/spine, terminate the pregnancy, or for me and the baby to both undergo surgery to repair her defect while in utero.  After giving me the options, he explained that if we were to continue with this pregnancy that having fetal surgery would provide the best opportunity for our baby to not have further damage done to the nerves in her spine.  The only caveat to having the surgery, however, is that our current family of three would have to pack up everything and move to Houston until after our baby is born.

After spending many hours praying and talking with one another, and several visits to specialists and the surgeons in Houston, Fred and I decided that we want to give our sweet baby girl the best chance at leading a normal life.  Once making the decision to go through with fetal surgery, we decided to name our baby girl Harper Mae Comparin.  On June 21st, Baby Harper and I will undergo surgery with one another.  This procedure is called fetoscopic surgery.  During the surgery my uterus will be removed, and instead of a large incision, the surgeons will put in two tiny port holes and use special scopes to repair the baby’s back.  The goal here is that without a large incision on the uterus that it is much less likely for leaking, an infection or tearing at the incision site that could force premature delivery.  Once the surgery is complete, I will be on bed rest.  Fred will serve not only as the primary care taker to Kellan, but he will also have the task of taking care of me until the baby is born.  From the time of surgery until delivery, I will be restricted from picking our son up, from doing anything physically taxing, carrying anything heavy or doing anything that could cause me to go into premature labor (even my ability to go on walks will be limited).   During this time we will also have to remain in Houston, living within 15 minutes of the hospital for weekly medical appointments and for the delivery of baby Harper.    

Our Needs

We are extremely thankful for all of your best wishes and we ask that you continue to keep our family in your thoughts and prayers.  We also hope that you will check back on our page for updates as to how our little love is doing.

Many people have asked how they can help.  This has been a difficult question to answer as we don’t truly know what to expect over the next five to six months.  In order to make this surgery possible for Harper, not only are we leaving behind our home in Austin, but also Fred has had to quit his job in order to take care of me and Kellan.  I will be on bed rest, and therefore be limited in my ability to work.  We have also had to find fosters for three of our dogs, and were lucky to find a one bedroom apartment within the required distance that will allow us to keep our other two with us.  With the pending decrease in income, all of the expenses associated with moving, and any possible medical expenses related to the surgery we know that this will be not only emotionally but financially taxing on our family.  As such, we are humbly requesting a monetary contribution to assist in covering not only the daily expenses of living, but all of the additional costs we will incur over the next five months.  If you are unable to assist monetarily, we will very gratefully accept any thoughts, prayers or virtual hugs as this will not only be trying on the three of us but will also have a major impact baby Harper.
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Erica Ardolino Comparin
Round Rock, TX

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