Wednesday, June 21, 2017

The Ultrasound We Never Expected

+JMJ+

This is going to be a long one, but it's because every detail is an important part of our journey. Please bear with me...and if you don't have time to read it completely, all I ask is that you pray for us.

About a month ago my husband and I headed off bright and early one morning on our "date" to my doctor's appointment. I was 18 weeks 3 days pregnant and we were eager to have what I call the "big" ultrasound - the approximately halfway-through-pregnancy anatomy scan that would (assuming the baby was cooperative) reveal to us whether we are having a boy or girl.

Typically I bring the kids to all of my appointments because, well, that's just usually what moms have to do if they don't have family nearby or a babysitter to call. Just this once, though, I had made the decision to try and find someone to watch the boys so that Michael and I could learn the exciting news together without any distractions, surprise the boys with a gender reveal, and simply share a bit of rare alone time (with the ultrasound technician, of course).

Thankfully, a friend from my Catholic moms group volunteered to come over to our house that morning which was truly a gift...because we were about to experience an ultrasound unlike anything we could have possibly dreamed or anticipated.

Soon enough we learned that our baby is a girl(!) and although I only said a few words of joyful surprise, internally I was over the moon. After having two boys (and suspecting I might forever be a "boy mom") I had hardly dared to dream of a daughter...and here she was! She was kicking, yawning, and moving so quickly the ultrasound tech was kept on her toes.

My favorite photo from this pregnancy, taken on Mother's Day - a few days before the ultrasound.
I felt nothing but anxious excitement & joyful anticipation, secretly hoping this baby might be a girl.

Towards the end of the anatomy scan we were looking at our baby girl's brain when the mood completely changed.

The woman administering the ultrasound took some measurements of the brain's lateral ventricles and promptly told us they were measuring noticeably large. She calmly informed us that the doctor would be in shortly and they would get to work fitting us in for a level 2 (high-risk) ultrasound with some perinatologists across the street.

When the doctor arrived she explained that the lateral ventricles are where cerebral spinal fluid starts out before draining down to the 3rd ventricle, the 4th ventricle, and then the spine. If the lateral ventricles are enlarged, it indicates that the fluid is not draining properly and is building up, which starts to put pressure on the other parts of the brain.

This is called ventriculomegaly and can happen for so many different reasons, many of which are completely unknown; known causes could be a genetic syndrome or chromosomal abnormality, an infection, a blockage somewhere in the ventricle system, or quite simply put the baby could just have been made that way from the moment of conception. Often there will be other anomalies seen either in the heart or other parts of the brain, especially if it's linked to something genetic; many other times the swelling is the only problem detected which is referred to as an "isolated" case. Much of the baby's prognosis depends on the root cause in addition to the severity of swelling, but we won't fully know that until she is born, has an MRI, and has some blood-work done (and yes, we were offered a fetal MRI but the doctors assured us it is unnecessary and redundant since she will need one after birth - and no amount of added data would change anything about our care).

To help paint a better picture, the lateral ventricles should typically measure no more than 10mm at any time during the pregnancy. The average size at our baby's gestational age is 6mm. Our daughter's were measuring at about 15, and after our high-risk ultrasound later that morning we were told the measurements were 15.2 and 16.1mm. 10-12mm would be considered a mild case, but with these measurements there was no sugar-coating that our baby's ventriculomegaly is severe.

Long story short, the OB made some calls and managed to get us that emergency appointment. We had the high-risk ultrasound, spoke with a perinatologist, spoke with a genetics counselor, and then spoke again with 2 perinatologists about what to expect and how to proceed from there on out.

Honestly, you know that what you're facing is serious when the specialists are completely swamped yet they still fit you in with only an hour of waiting; then, despite how busy their office was not one, but two perinatologists sat down to discuss the details of what our care will look like moving forward. They did not appear rushed or to be thinking about anyone else and displayed the utmost compassion and respect while they were talking with me, which I found to be a very welcome surprise...but it also helped me understand the gravity of the situation from their point of view.

That day we learned an alarming amount about ventriculomegaly and hydrocephaly (which is what ventriculomegaly starts to be called when the measurements are >15mm). We were told it is almost a certainty that our daughter will need surgery shortly after birth; hydrocephalus is treated by putting a shunt in the brain to drain the excess cerebral spinal fluid and alleviate the added pressure. The pressure on our baby's brain as she grows can have a variety of outcomes in terms of cognitive and/or physical developmental delays, but typically there is somewhat of a correlation between the severity of the swelling and the severity of an outcome - and the doctors indicated they have no reason to doubt that the lateral ventricles will continue increasing in size throughout the pregnancy....

We recently returned for another follow-up ultrasound, hoping to learn that our baby's lateral ventricles had decreased or at least stabilized but that was not the case. We were not shocked to see that the vents have increased, but we were a bit surprised to see just how rapidly they have increased: in exactly one month the vents have progressed from 15.2 & 16.1mm to 21.8 and 23.2mm. 

Additionally, our appointment last month suggested possible agenesis of the corpus callosum but the doctors couldn't get a great angle. We held out hope that perhaps this time they would get a better look and inform us the corpus callosum was fine, but again this was not the case. They did get a better angle and still don't see any evidence of a corpus callosum (CC). The CC is a band of nerve fibers that connects the two hemispheres of the brain; plenty of people have an absent CC and are perfectly healthy, so this isn't really the main concern. It's commonly seen with ventriculomegaly, but it was still a bit of a blow to the optimism we were struggling to hold onto all month.

To summarize, our baby girl has a medical condition with her brain that is called severe ventriculomegaly/hydrocephaly which may or may not lead to mild or incredibly severe cognitive or physical disabilities. In addition, it appears that an important structure of her brain (the corpus callosum) is missing/never formed. I think you all can imagine what kinds of information we were told we might expect from this condition and none of it is pretty. This is one of those medical conditions that commonly tosses around the words "dismal," "poor quality of life," and "bleak" to name a few.

Many people want to know what all of this means practically speaking in terms of the pregnancy and delivery. In short:


  • There is nothing to be done during the pregnancy other than to wait. There are no preventative measures, no possible in-utero fixes, and no genetic tests that can give any definitive answers regarding the root cause of this condition (there are plenty of things our baby can and will be tested for once she is born, so we will get some definitive answers then). 
  • Currently we will plan on a normal delivery, but depending on the progression of swelling in the brain and the baby's head circumference I may need a C-section. 
  • It is highly unlikely I would be induced early for any reason (research studies showed this to have poorer outcomes because younger babies risk more complications from surgery and recovery). The doctors want the largest, most fully-developed baby possible for the neurosurgeons to operate on in order to give her the best possible outcome.
  • We have transferred our care to the specialists, will now be delivering at Duke University Hospital (which is consistently nationally ranked for neurology and neurosurgery), and will have monthly (level 2) ultrasounds to monitor our baby's condition.
  • We will have a fetal echo-cardiogram performed to hopefully verify that everything is perfect with the baby's heart (because ventriculomegaly is commonly seen with other brain or heart anomalies).


Pretty soon we'll be meeting with the pediatric neurosurgeons at Duke to discuss logistics and get more questions answered, but we basically have a whole lot of uncertain waiting ahead of us.

After birth our daughter will most likely need brain surgery and beyond that we have absolutely no way of knowing anything - because there is no telling what the pressure could mean in terms of how the rest of her brain develops and functions. Our baby girl could appear perfectly healthy otherwise or she could experience a multitude of symptoms or developmental delays I feel it unnecessary to list here.

These past 5 weeks my husband and I have been through an array of emotions as we process, grieve, and move forward. We do not lament our daughter's existence, but rather grieve because of the situation and the cards she has been dealt. After two perfectly normal, uneventful (in every good sense of the word) pregnancies this really was shocking news. No one ever expects this kind of thing.

To be honest, I don't need people to tell me to have faith or hope - because we do and always have. But having faith doesn't mean that we can't feel sad or angry or concerned about what this might mean for our daughter and our family. As Christians we are not worried in the traditional sense because we know God will be with us - but of course we have logistical concerns. We do have peace, though, that everything will transpire as the Lord plans.

I don't need people to tell me not to Google things or worry myself, because my husband and I are praying hard but we also refuse to go into this situation blindly or naively. It's important for us to read the medical literature given to us by our doctors, to understand various case studies about ventriculomegaly or hydrocephaly (especially the cases most similar to ours), and to know the statistics and risks of things like our daughter potentially being stillborn (which I am very sad to say are high enough that we need to take note and at least consider that the worst could happen).

I also don't need people to shrug off our daughter's condition or what we have been told as something that is no big deal just because there is a (small) chance she will be fine. Sure, doctors don't know everything and God is beyond statistics, data, and case studies - but just because there is a small chance our baby's outcome may be completely normal does not mean we can count on it or plan for it. The statistical likelihood of our daughter being stillborn is far greater than that of her surprising us with a perfectly normal outcome with no health issues or developmental delays. Suggesting to us that she can be fine (which of course we hope and pray for!) doesn't help at all when we must also prepare our hearts for the possibility that she might not be with us very long.

The fact is that we have been given more than half of this pregnancy to prepare for the worst (while hoping and praying for the best) so that no matter what the Lord's plan is for our daughter and our family we can learn to embrace it with peace. We need to accept the worst as a possibility so that if it comes we are not shocked and can better see His goodness through it all.

It should go without saying, but we also do not need to hear anything cynical or negative. If anyone in our lives processes this information and feels the need to comment in a manner that is anything less than supportive or mentions the concept of "termination," we do not want or need to hear from you (no disrespect, but this journey is difficult enough without unhelpful or negative comments).

What DO we need?? Prayer. And sometimes a listening ear, to be accompanied on this journey. Because I think the only thing worse than experiencing all of this would be to go through it all alone.

There are (rare) cases of mild and severe ventriculomegaly that have resolved themselves in utero and we believe the Lord can fully heal our daughter if that is His plan for her. We have much faith - and we also recognize that a complete healing may not be God's plan. Whatever He wills, we will accept.

We wholeheartedly believe that this daughter was given to us and we were chosen as her parents for a reason; no matter the outcome we trust the Lord to carry us through. And despite any anger, sadness, or stress we may experience we simultaneously rejoice for this little girl and the gift that she is to us. Never before have I simultaneously experienced so much sorrow in tandem with immense joy as we prepare to meet our baby girl face to face. The only way I can think to describe it to those who haven't experienced something similar is to say that it's a heart-wrenching place to be in - one that I can only hope is refining us so that we may be drawn deeper into the love and mercy of our Lord.

We have much to celebrate, so I am making more of a concentrated effort than ever before to enjoy ALL the pregnancy things with this baby (like decorating the nursery specifically for her!), because no matter what happens she is fiercely loved. And to be frank, I need something beautiful and joyful to cling to and focus on so that I do not lose sight of what a miraculous, wonderful gift this baby is.

Our baby girl at 22 weeks 3 days. Isn't she beautiful?!

Right now we are facing a lot of uncertainty, but I can see many ways in which we have been blessed already on this journey. So many, in fact, that it's a topic deserving of its own follow-up post at a later time.

I'm actually surprised by how "normal" Michael and I have managed to be, all things considered - which I am certain is in thanks to all the prayers we are getting. Right now we are striving to live with joy, peace, and much gratitude for all the children we have been blessed with; we are taking advantage of fun trips and experiences we can have with the boys before things get more complicated and doing all the tangible things we can think of to welcome this baby girl and prepare for her arrival.

So...please pray for us.

We are praying first and foremost for a healing miracle, for a safe delivery, a successful surgery if it is needed, and the best possible outcome we can hope for. We are praying especially through the intercession of Our Lady of Guadalupe, St. Gianna, and (last but not least) St. Gerard. St. Gerard is a patron of expectant mothers and has multiple miracles attributed to his intercessory prayers that have brought safe deliveries to moms and babies in high risk situations. And his feast day is our daughter's due date. Once I realized this I felt another wave of reassurance that God is truly with us, because anyone with eyes of faith can see that it surely is not a coincidence.

After all, there are no coincidences - just God-incidences.


"Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.
We know that all things work together for good for those who love God, who are called according to his purpose."

Romans 8:26-28

7 comments:

  1. Teared up reading this and thanking God for your courage and vulnerability in sharing this with everyone!! I have a sticky note on the upper left corner of my computer at work that says "Pray for baby girl Kung!" :-)

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  2. praying... you are at the right place - Duke is amazing. I met several neurologists there when I took a daylong course. when I have trouble understanding or accepting God's ways, during hardships and trials, I meditate on this verse: For my thoughts are not your thoughts,
    neither are your ways my ways, says the Lord....

    But from this post: you are already way ahead of the game. May the Lord be with you and your baby girl. You have my prayers +

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  3. Stephanie, thank you for sharing. What a cross this must be for your family. I'll keep you and your daughter in my prayers.

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  4. I am praying for you and your family. Rest in His love for your family & your sweet baby girl. It's amazing to think how the Lord led you to NC...With a medical facility that is ranked one of the best for your family's specific need!

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  5. Praying so, so hard for all of you.

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  6. Said a Memorare and I'll be offering up for you guys and your girl. We had a life shattering 20 week scan ourselves and the rest of the pregnancy and all of the unknowns were the worst. Holding you guys close in my prayers from now on.

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  7. Dear Stephanie & Michael,

    I will be praying to Venerable Fr. Solanus Casey soon to beatified. Solanus Casey who died in 1957,known for his ability as a spiritual counselor, will be beatified at a Nov. 18 Mass in Detroit, the local archdiocese announced Tuesday.

    Born Bernard Casey on Nov. 25, 1870, he was the sixth child of 16 born to Irish immigrants in Wisconsin. At age 17 he left home to work at various jobs, including as a lumberjack, a hospital orderly, and a prison guard.

    Reevaluating his life after witnessing a drunken sailor brutally stab a woman to death, he decided to act on a call he felt to enter the priesthood. Because of his lack of formal education, however, he struggled in the minor seminary, and was eventually encouraged to become a priest through a religious order rather than through the diocese.

    So in 1898 he joined the Capuchin Franciscans in Detroit and after struggling through his studies, in 1904 was ordained a “sacerdos simplex” – a priest who can say Mass, but not publicly preach or hear confessions.

    He was very close to the sick and was highly sought-after throughout his life, in part because of the many physical healings attributed to his blessings and intercession. He was also a co-founder of Detroit's Capuchin Soup Kitchen in 1929.

    Archbishop Vigneron said “I think Father’s humility is a sign of the Gospel truth that God works through the little ones,” Archbishop Vigneron said, adding Fr. Solanus’ “littleness” is reminiscent of the Blessed Virgin. “St. Paul says, ‘We’re just vessels of clay so that God can be glorified.’ Father’s life, to my mind, is proof that the New Testament didn’t end when the books were finished being written, but they continue today.”

    Everyday, I will say this prayer until the "official" prayer for beatification comes out. Somehow, I don't think the Lord will mind!

    PRAYER FOR THE BEATIFICATION OF VENERABLE SOLANUS CASEY

    O God, I adore You. I give myself to You. 
    May I be the person You want me to be, 
    and may Your will be done in my life today.
    I thank You for the gifts You gave to Father Solanus. 
    If it is Your Will, bless us with the beatification of 
    Venerable Solanus so that others may imitate 
    and carry on his love for all the poor and suffering of our world.
    As he joyfully accepted Your divine plans,
    I ask You, according to Your Will, 
    to hear my prayer for Stephanie & Michael's precious little girl 
    through Jesus Christ our Lord. Amen.
    “Blessed be God in all His designs.”
    Imprimatur: Adam Cardinal Maida, Archbishop of Detroit
    March 31, 2007   © F.S.G. 3/07

    Love & God bless,
    Ann

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