The Incredible Shunt Alternative for Hydrocephalus

I still remember sitting in the hallway of A.I. duPont Hospital for Children and hearing that CRY. It was one of the most beautiful sounds I'd ever heard. It came from around the corner and before I could even see her, I knew it came from our six month old baby girl. It was the sound that reassured me Adria would be okay after having just undergone head and brain surgery.

Six month old baby Adria that Monday morning before her surgery.

That morning was exactly six years ago today, but I still get emotional thinking about my husband and I sitting in the parent waiting room for a couple hours while our precious little Adria become only the eighth child in the U.S. to have a unique and revolutionary procedure done to treat her Hydrocephalus.  This build up of fluid in the ventricles of the brain is very common in children/babies with spina bifida (Adria has L4-5 myelomeningocele), but the typical treatment is a VP Shunt, which is a tube inserted into the brain to allow the excess spinal fluid to drain down into the abdomen. While this helps the issue, most children (and adults) with a shunt will have complications and malfunctions over time that can require multiple surgeries to correct.

This image shows what a Shunt looks like in babies. Many with spina bifida need this,
but Adria never did because of the ground-breaking procedure her pediatric neurologist performed on her.

Instead of having a shunt to treat her hydrocephalus, Adria's neurologist recommended a procedure called Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC). Yeah...try to remember that name, let alone explain to someone what it means... But the fact is, this procedure successfully treated Adria's hydrocephalus and six years later, she has experienced NO COMPLICATIONS from it or every required another surgery!!! This is truly incredible. The only evidence that she even had an operation is a small scar buried in the hair atop her head.

Adria's Recovery

Soon after we heard the familiar cry in the hallway six years ago, we saw our sweet baby and held her in the Recovery Room. It was a large room full of young patients just coming out of surgery with just curtains separating us. Unfortunately, Adria's cries would not stop because she was so hungry. In preparation for the surgery, she had not eaten since the night before and the IV nourishment just didn't cut it for her.

The nurses were concerned about her throwing up if I fed her a bottle. But I started to be in extreme pain too...any mother who has nursed her baby and heard the cries of a hungry baby knows what I mean. Before too long, a nurse heard me complain about it and asked, "Oh, do you still breast feed her?" I told her Yes, and the nurse said, "Well then she can eat! She should be fine to nurse, breast milk is okay for her tummy." Praise the Lord! At that moment, I was more thankful than ever that I could nurse Adria. Within minutes, we were all Much Happier!

As Adria recovered from surgery, she did experience a lot of swelling on her head and looked so different. But Daddy held her in his arms for hours at a time and she recovered well and was transferred from the PICU (pediatric intensive care unit) to a regular patient room late that night.

Adria in the PICU after surgery with swelling on her head and paddles on her hands to hold the IVs in place.
Good thing she had her Soothie pacifier to provide extra comfort!

Daddy giving his baby girl some healing love.

Adria recovering in her patient bed that looked like a giant cage.

Within a few days, we were headed back home with a happy little girl who just had a little bald spot of her head where the surgeon had performed the operation.

The Man Behind the Surgery

Occasionally in life we find ourselves blessed and touched by an individual simply because we were IN THE RIGHT PLACE AT THE RIGHT TIME.

Now I don't necessarily believe this is coincidence; it's more like divine appointment. And for our family, this happened at a most critical time in our lives.

We met Dr. Benjamin Warf when I was five months pregnant with Adria. In the weeks following the ultrasound that first revealed our baby girl had spina bifida, we found ourselves sitting in front of many different doctors and specialists...desperate to learn and understand more about this unique life I carried.

Dr. Warf sat there with us in a tiny room at A.I. duPont Hospital for Children in Wilmington, Del. His kind and humble demeanor immediately put us at ease, even as our minds buzzed with the information he provided. We did not realize it then, but I know this to be true now, he is one of the BEST PEDIATRIC NEUROSURGEONS in the World! This is no exaggeration.

He is the father of six children and actually pioneered the ETV/CPC procedure to treat hydrocephalus while serving as a missionary doctor in Africa for six years. He realized the need to treat this condition without a shunt, particularly in a developing country where a shunt malfunction can quickly become life-threatening. He had fairly recently returned to share this procedure in the U.S. when we first met him.

Warf remained at A.I. duPont Hospital only a short time, but he was there to operate on our daughter's spina bifida closure surgery at birth and this surgery six months later. That following summer he moved on to Boston to further develop and teach this new procedure to medical students at Harvard and work at Boston Children's Hospital. Before he left Delaware, he did teach the ETV/CPC to another neurologists who is still at A.I. duPont Hospital performing this life changing surgery on children.

Even today, six years later, this procedure is still NOT widely known or used in the medical and Spina Bifida communities. I am a HUGE supporter of it and highly recommend any parent research whether this is an option for their child!

Since it's very difficult to explain what this surgery exactly is, I'll let Dr. Warf do the talking.

I just found this great video where Dr. Warf explains Hydrocephalus, a shunt and the benefits of the ETV/CPC procedure! Take a look:

Spina Bifida is NOT a Disease

Spina Bifida is NOT a Disease.

It is not contagious. It is not something that's developed later in life.

It's not something you can "recover" from. It cannot be cured. It is not (generally) life threatening. It does not have the same symptoms for all people.

Spina Bifida is something you are born with...or not. It's determined within the first several weeks of pregnancy and is a result of the spinal column not forming properly.

It's fair to call it a "condition" and it is often referred to as an "abnormality" or "birth defect", but to the person living with spina bifida or to the parent of a child with spina bifida it is Not a Defect or a DISEASE that they "suffer" from.

At least that's the way this mother sees it.

I just felt the need to clarify the issue a bit because I have read several well-meaning articles about spina bifida that refer to it as a Disease. I don't think anyone who knows my 6 year old daughter Adria, would refer to her as having a disease - not with her giant smile, witty remarks, social personality and confident strut. (Of course there are children who have diseases that still have these same great qualities!) Adria is like most children in many ways, except for a few unique challenges that are a result of being born with spina bifida.

But I realize that it is hard to understand. The fact that more than 160,000 Americans live with spina bifida makes it more common than most permanent birth "defects" (ugh, I don't like that term). Yet, spina bifida is still widely unknown and misunderstood.

A friend recently shared an interesting article with me about a mainstream, "celebrity couple" who has a beautiful daughter with spina bifida. The article highlighted a conversation with the mother Nicole Ari Parker about some of her daughter's challenges along with a special letter from the girl's father Boris Kodjo on her 10th Birthday. You can read the FULL ARTICLE HERE or watch this brief interview about their daughter Sophie.

I really enjoyed reading the article and relating to this couple and their daughter, especially the love and pride they obviously have for her. Even so, a line penned by the author stood out to me:
"Nicole opened up about their daughter’s disease last summer,"

I'm sure it was perfectly innocent and well-intended, but I couldn't help but wonder if tagging spina bifida as a "disease" irritated Sophie's parents like it did me.

To me, the term Disease implies a degenerative illness or sickness that significantly reduces one's quality of life and worsens over time. While some might believe that's the case with Spina bifida, it does not have to be. Many individuals with spina bifida lead long, fulfilling lives... even while dealing with the daily necessities of catheterization, leg braces and/or wheelchair mobility, medications and much more. There's no question that life with spina bifida is more difficult, but it should not be treated as a Disease.

As I read the article, I did not want to dwell too much on that one line. I loved the words that Sophie's father Boris wrote to her last week and felt that I could say the same for Adria:

"You’ve shown me what true strength and courage is and you taught me that the love of faith and the faith in love is one and the same.  I’m in awe of your ability to defy the odds and I marvel at the confidence with which you produce miracle after miracle. You smile your way through life and your light touches everyone around you."

We are blessed to be parents of incredible children, and we each have a daughter who happens to live with a condition called spina bifida but is not defined by it.

Adria strikes a pose in a new purple dress that she loves.

For more information on Spina Bifida, take a few minutes to read these posts:

WHAT EXACTLY IS SPINA BIFIDA

PREPARING FOR KINDERGARTEN

OCTOBER IS SPINA BIFIDA AWARENESS MONTH

Due Date - 2 Months from Today

"Ugh...I've been waiting thousands of days!" Adria lamented tonight as I told her that Baby Brother should be joining us in about two months. "But that's so long, Mom!"

Haha! It has definitely not been thousands of days, in fact it feels like time has passed rather quickly since we first told her that Mommy had a surprise in her belly. And here we are continuing the 10 week countdown to Baby's due date that I started last week.

Monday marked 31 weeks pregnant, and my due date is officially just 2 months from today - May 4. It's getting real! Baby should weigh more than 3 lbs. and be about 16 inches long.

It was a pretty busy week for us in Baby World.

Hello Baby Class

On Thursday night, I rushed home from work and packed up the girls to head to a special class in Dover at 6:00 p.m. The Hello Baby class is offered by Bayhealth, where I plan to deliver, and is a special program for young children ages 3 to 6 awaiting the arrival of a new sibling. Since the girls are so excited about baby, I thought they might enjoy it. It was actually the first birthing or pregnancy class I ever attended.

Just an hour long, the interactive program involved practice diapering and feeding of a baby doll along with "big sister/big brother" stories and baby safety games. The four of us families in attendance were amused by our children's responses to some of the questions from the instructor. It was a good experience, but I dare say, the girls may have enjoyed our special stop to Chic-fil-A afterward even more :) It had a play place and ice cream after all.

Adria in the van with the baby she brought to class.

Doctor Appointment

Friday morning I had my last monthly OB check-up. Now, we go to every other week. My belly has seriously grown in the last couple weeks, and comments from people along with scale definitely confirm that. All the sudden, people aren't bashful to ask if I'm expecting...they are quite confident in this fact. According to the midwife who saw me Friday, my belly is measuring just right for 31 weeks.

I am also thankful to report that my pregnancy glucose test came back fine, and baby's heartbeat is good and strong. Everything looks healthy and normal! I do not take this for granted. The only downside of good news, is that it means no more ultrasounds...so the one I had in December may be the only sneak peak I get of Baby Boy. So much different from 6 years ago, when I was seeing level 2 ultrasound images of baby Adria in my tummy often because of her spina bifida.

Friend's Baby Shower

Saturday I had the opportunity to stop into a Baby Shower for my friend Heidi and see her pregnant belly for the first time. She's due just a couple weeks before I am with a baby girl and looking forward to motherhood.

Heidi and I expecting to meet our babies within a couple months.

Pregnant Blessings at Work

Saturday also marked the end of a very cold, icy and snowy February. Yet somehow, it ended up being one of my best months of sales at work. I ended the month with deposits from clients for 6 New Homes to be built! That's a great month in custom new home sales and I give a lot of credit to the Baby belly, now that it's more obvious. I think pregnant women just appear more trustworthy...it's been a trend with all three babies that I sell really well close to their due dates!

Mommy in her work uniform and Adria in her matching school uniform this week.
Love the mini-me :)

Icy Shores

And just to get a unique experience brought on by the February chill in Delaware, we headed down to the coast early on Sunday morning. The shoreline of the Altantic Ocean in Rehoboth Beach was unlike anything I've seen before... large ice chunks and slush extending back more than 30 feet from the crashing waves, which had just been loosed from the ice slush. It was quite incredible, and worth the early morning outing which was kept brief since I had to be to work by 11:00 a.m. on Sunday.

Daddy and the girls enjoying the ice slush on the Rehoboth Beach shore Sunday morning.

Not so Easy Times

Yet even as I recount our baby joys and experiences this week, I think of several others who have had very difficult and dramatic week. A dear friend from college had her fourth miscarriage, a family in the community lost their four year old son, a lady I used to babysit for is dealing with news of cancer, a young family anxiously awaits the day they get to bring their premature son home from the hospital, and I know there are many more.

Precious moments and joys in life can be fleeting. I try to treasure the experiences and remember to pray for those whose hearts are filled with sorrow and grief instead of hope and anticipation.

The Pressures of a Woman

Do you feel it? The Pressure. The Expectation. The need to perform in so many different areas of life, leaving you exhausted and empty.

Recently, I took my pregnancy glucose test, which involves drinking a bottle of sugary orange drink and sitting for an hour at the lab before they take your blood. During that waiting period at LabCorp, a show called The Talk came on (which I never watch since I'm usually at work) and one topic the women covered was whether they've been able to have a good balance of Work Life/Social Life.

It got me thinking about the question that was posed...Can we have it ALL?

By many appearances, some might say that I do have "it All" - a handsome and loving husband, beautiful children, my own home, a successful career, many friends, and a supportive extended family. And it is a wonderful thing to be so richly blessed...To God be the Glory!

But let me tell you, having "it All" does not come easy. It comes with pressure...lots of pressure. I think many of you can relate and will know what I mean.

Our American culture and society has created this image of what a successful woman and mother should look like and be like. And so often we listen to that, we give in and feel those expectations weigh down on us every day.

Let's take a look at each of the areas of Blessing, which also become Pressure areas of our lives.

Husband

When we are young we dream of finding our Prince Charming. Should we be so fortunate to experience the intimate bond with a husband, we quickly realize there are vast differences in our behaviors and views on life, causing even the most minor issue to escalate into all-out war within the home. We learn marriage is much less about kissing and cuddling, and more about giving and compromise. And to keep the marriage alive, we must give of ourselves...Give our husband respect, give him time and attention, and give our body to him. These are critical things, yet as life pulls us in every direction, every day, giving to our husbands can be the first thing we neglect. It is a treasure to be married, but it comes with pressure.

Children

These precious babies that we carry or adopt or care for as aunt/step-mom/grandma, they give us some of the greatest joy that we can experience in life. And some of the greatest pain and stress. Each day we have the pressure to not only love and care for them, but to teach them about life and faith and shape their worldview. But these lessons are rarely a structured teaching session as we find ourselves frazzled and raising our voices for the fighting to stop or for them to eat their vegetables and stop sneaking candy out of the the pantry! And we need to make time to PLAY with them, which can be fun but also exhausting. Oh yes, and feed them healthy meals that they actually might eat three times a day. It's a daily battle to be the Mom we want to be, the Mom we think we should be.

Home

And then there's our home. We want it to be a haven of rest and peace, but it's seriously a never ending job to keep the place looking decent. Just when we've finished the laundry, cleaning dishes, and sweeping the floor, we walk into another room and find it covered with crushed crackers, a multitude of toys, and possibly marker on the wall. It's day in and day out. The same tasks over and over and over again. Though on this front, I have to give my husband a great deal of credit. As the stay-at-home parent, he feels this pressure much more than I and really does a great job keeping our home clean and comfortable.

Work and Finances

Whether our work is the full-time care of our home and children or employment outside the home, we have the pressure to do it well and provide for our family. We strive to contribute so that our family can be well fed and clothed and possibly enjoy some fun excursions. As the sole income earner for our family over the past six years, this is a huge pressure area for me as I work on commission, which forces great performance in order to make a good living and bring home a paycheck. It's been a constant roller coaster of never knowing what our income would be month to month and year to year. Yet any time I feared it would not be enough, God provided. At times the provision has been exceedingly abundant, other times it was just enough. Still, we face the constant pressure to balance our finances with needs and wants, paying off debt, saving for the future, and keeping up with the monthly bills.

Faith and Church

We are blessed to live a life of faith, where we can trust in our Heavenly Father to guide our path. Yet even as we experience this joy of knowing God, we feel the pressure to spend more time in devotion, in Bible study and in prayer. We struggle with "making time" for this relationship that really should be the underlying thread of everything we do. And as we go to church, we feel the pressure to give and serve. We volunteer for duties and tasks that we hope help others and are appreciated yet are often unseen. I admire the commitment of so many that I see in our church, as we are limited in the extent we can give here.

Health and Beauty

In the midst of it all, we have our health to consider. This incredible human body that requires daily maintenance and upkeep to function properly. It's the pressure to eat well, exercise more and find time for rest. We see images all around of what we wish we looked like or felt like. And we struggle to be content and love the body we have been given, yet embrace our responsibility to keep it well. We want to enjoy flavors, tastes and good 'ole home cooking, not worry about counting calories. Just to be clear, I am not a fan of calorie counting, but I am a big believer in staying active - walking, jogging, biking, Zumba, exercise videos, dancing...whatever is most enjoyable. Being healthy is the goal, not rail thin. Along that same line, we feel the pressure to look good. To portray some level of fashion sense and ability to make our hair and make-up appear put together. Beauty is more than skin deep, but we all want to feel attractive.

Friends

If we are extremely fortunate, we have one or two close friends who know us well and a dozen or so others that we can visit with at any time. But no matter how many friends we have, we have the responsibility to cultivate those relationships - to pick up the phone and call, to send a note, and to invite them for coffee or dinner. Social media in not an acceptable medium for our only communication with close friends! We need to talk face to face when we can squeeze in a few moments and listen to the pressures our friends are facing. We are all in this together and need support when the pressure is overwhelming.

Me

And last but not least, we have the pressure to take care of ME. It is not a selfish thing, it is a necessity. If we are not taking care of our mental and emotional health, how can we possibly meet up to all these other "pressures" in our lives? Healthy living is more than eating right and exercise, it involves finding something that helps us unwind, relax and recharge. This is usually the hardest thing to fit into our day and week, but let's try to squeeze in a few minutes when we can!

Where does this leave us?

This contemplation leads me to the conclusion that every Blessing comes with great Responsibility. Your blessings and pressures may be much different from mine, but I believe this truth remains.

It's not only society that drives this idea, it's Biblical. Most of us have heard Jesus' words from Luke 12:48, "For everyone to whom much is given, from him much will be required; and to whom much has been committed, of him they will ask the more."

So if we are richly blessed, we do have the expectation to give more of ourselves. And you know what, that is okay. If we really want to live with less "pressure", are we willing to give up some of the blessings?

Further, much of the pressure is self-induced. No one expects us to perfectly fulfill each of these roles. We usually put greater expectations on ourselves than anyone else. Maybe we can "have it All", but that does not meant that we can "do it All" without falling hard on our faces at times. 

At any given point I have piles of clutter or "to do" projects all over the house, my children are not perfectly obedient, dear friends are still waiting for me to call, and my husband is irritated at my constant procrastination. I don't have it all figured out. And if you do, please share how... on second thought, keep it to yourself. Most of us can't handle hearing that someone has perfectly mastered every area of "pressure" in her life. I'm pretty convinced that person does not exist.

We just need to find contentment in realizing we just try our best (that day) to fulfill every role and accept the fact that we really can't "do it All". But if we believe, we can be equipped with the support of the One who says we can do "all things through Christ who strengthens me." (Philippians 4:13)

Let's try to find the Joy in the blessings and know that we don't have to perfectly achieve in every area. We just can't let the pressure get so strong that we give up. We have people counting on us to find that strength that comes from beyond ourselves. We can do this! By the grace of God, we can.