Big Sister

Big sister is 5. Adria Mychelle is an amazing miracle. She has spina bifida but doesn't let it keep her down.

A LIFE WORTH LIVING

Our precious older daughter is the real inspiration behind this blog. She is a champion fighter, a young girl full of life and love who has fallen down more than any of us, but she gets up without hesitation every time.

Adria is our beautiful 5 year old daughter living with spina bifida

Adria is inspiring. Her enthusiasm and affection draw you in. She often speaks with a wisdom and insight beyond her five years of age, yet she is very much the typical little girl who enjoys playtime, pre-school and watching cartoons. Her favorite activities include singing along with Disney’s hit movie Frozen, playing dress up and tea party with her little sister, putting puzzles together, baking with Mommy or for pretend in the sandbox, going to zoos and museums, and visiting anyone who is “my size” as she says.  Of course, she’s got her fussy, defiant and stubborn side too, but that’s all part of growing up.

A TERRIBLE QUESTION

We can’t imagine life without her. Yet that was a possibility. The real shocker is that when she was growing inside Mommy, we were even asked if we wanted to keep her.

“Do you want to terminate the pregnancy?”

We were asked that horrible question a couple times on the day we learned about a birth defect called spina bifida and that the 20 week old baby girl growing inside Mommy’s belly had this life-altering condition.

They said she may never walk or urinate on her own, and she would need several surgeries along the way. Life would be difficult for her and us. The doctors were offering us a choice.

But to us, there was no question. No way would we kill our joy, this life we had created together. Though her diagnosis floored us, we were a healthy couple in our late 20s expecting our first child and we determined right then and there to give this precious girl the best life we could.

REASON FOR HOPE

The main reason we want to share her story is to give HOPE. Hope of how beautiful life can be with spina bifida. No, it’s not easy. She has and will face many uniquely difficult challenges, but she is a contributor in this world and has a purpose that we can only imagine.

Adria has been extremely fortunate and functions at a very high level with her spina bifida. We know that many children with a similar diagnosis have undergone dozens of surgeries, endured countless hospital stays, and never taken a single step. We applaud all children with differing abilities and the sacrifices their parents make and hope that they can feel encouraged by her progress and not discouraged by any comparisons.

ABOUT SPINA BIFIDA

One thing is for certain with spina bifida. It affects every person differently. In the U.S. about 1,500 babies are born every year with a type of spina bifida, making it the most common permanently disabling birth defect.

The term spina bifida literally means “split spine.” Just about 28 days after a baby’s conception, the spinal column is formed and sometimes it does not close properly. The most severe type of spina bifida is known as myelomeningocele which results in a sac protruding from the baby’s back that causes part of the spinal cord to stick out.  It can be anywhere on the spine, but the higher the lesion, the more it impacts the body’s functions. Adria was born with this “bubble” as we call it, in the lower lumbar area of the spine where it often appears. The doctors in the spinal dysfunction clinic at the children’s hospital call her one of their “L-4/L-5 Kiddos.”

She has regular visits with a team of specialists who track her progress and guide us through each stage of her development. They include the following:

• Pediatric Nuerosurgeon: who monitors the amount of fluid on her brain through  MRIs and Cat Scans, as spina bifida often causes Hydrocephalus, and she had to have surgery for this
• Pediatric Urologist: who monitors her kidneys and bladder to watch for normal growth and check on reflux issues since she is incontinent and requires regular catheterization
• Orthopeadic Doctor: who checks her legs, hips and joints and provides prescriptions for her leg braces a.k.a. AFOs (Ankle Foot Orthotics)
• Orthotist: who sizes her feet and legs to create a new pair of leg braces/AFOs at least once a year
• Physical Therapists: who help her achieve mobility through regular exercises
• Rehabilitation Medicine: who provides overall support with all her physical challenges including weight management and bowel control programs

When written out like that, it seems very daunting, but we usually only visit the doctors twice a year now and we have developed a fairly comfortable rhythm of life with Adria’s unique needs. It’s just part of the daily routine to put on her braces every morning, catheterize her four times a day, give medicine three times a day, and sit her on the potty after an enema every night.

ADRIA’S TIMELINE

BIRTH: Our sweet baby was born in Delaware on September 8, 2008. She was delivered via C-section with a team of specialist all around and at just a few hours old she was taken away to a nearby children’s hospital before we ever got to hold her.

About 24 hours later, the neurosurgeon performed her spina bifida closure surgery, putting her spinal cord back in place and stitching closed the opening in her back.

Mommy saw her again and held her for the first time when she was four days old. She recovered well and stayed in the NICU at A.I. DuPont Hospital for Children for 12 days.

6 MONTHS: As the months went by, the fluid on her brain continued to expand and she required surgery to fix the hydrocephalus. Most doctors treat this condition with a shunt (a tube inserted into the body that drains the fluid from the brain to the abdomen), however we were blessed to have Dr. Benjamin Warf as her neurosurgeon. He had spent years as a medical missionary in Africa and devised an alternative to treat hydrocephalus without a shunt. Adria became only the eighth child in the U.S. to have a surgery called Endoscopic Third Ventriculostomy with Choroid Plexis Cauterization!

It’s a mouthful, but we attribute much of her incredible development to this procedure which has so far successfully treated her hydrocephalus. Many times children have malfunctions with their shunts and require multiple surgeries to fix them. To date, the two surgical procedures are the only ones Adria has had.

1 YEAR: Every milestone was so significant. On her first birthday, Adria crawled for the first time with a cute army-style crawl. Soon she was crawling and scooting all around. She was already learning to talk well and memorize words from books. By 18 months, she could pull herself to stand on a couch and take a few steps along it.

2 YEARS: Around age two, she got her own little walker and started using it with ease four months later. It gave us great joy to watch her bang that walker through the house, down the sidewalk, and around stores.

It was also around this time that we had to start regularly catheterizing our little girl due to several UTIs (urinary tract infections) she had endured that year.

3 YEARS: Then came the biggie. About a month before her third birthday, she took her first steps on her own. Within weeks, the walker had been abandoned as she relished in her new found freedom!

4 YEARS: She took her first steps around the house barefoot, no braces needed. Her balance improved and she learned to kick a ball while not holding onto anything with her braces on. She also started a bowel routine in an effort to keep her diapers clean.

5 YEARS: Her recent huge accomplishment is walking up and down steps completely unassisted! No hand holding or rails…it’s amazing to see her develop such strength and confidence.

While spina bifida impacts Adria's daily life, it does not define her life. Though she is becoming increasingly aware of her differences, we hope and pray that she continues to rise up! This little girl is destined for great things.