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Unexpected.

The powerful story of a young couple's brave journey with spina bifida.

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FROM THE OUTSIDE

"My goal is to create awareness for couples and families facing this challenge. I used to think something like this would never happen to me....until it did," Ashley confessed, tears welling up in her eyes, "I want families to feel encouraged by our story and know they are not alone. No matter how daunting this may seem, there are people out there who have overcome these challenges."

She was sitting across from me in an over-sized chair with her feet propped up on a stool. She was 9-months pregnant, and due to give birth to Baby Harding in just 12 days. Her compassionate and supportive husband was sitting closely beside her. The young couple had just finished celebrating their 1-year wedding anniversary a few weeks prior. I immediately took note of their strong connection and devotion to one another. From the outside, they appeared to be an ordinary couple expecting a baby. What the world didn't know, is that they had spent the last 5 months navigating the harsh reality of their baby's unexpected diagnosis with a rare birth defect known as spina bifida.

This is their story.

THE ENVELOPE | May 18, 2016

When it comes to revealing the gender of a baby, every couple is different. Some want to keep this exciting secret to themselves, some want a big surprise on the day of birth, and others tell their family and friends through colorful cupcakes and creative fanfare. Ashley and her husband had big plans to tell the world! But first, they wanted their sonographer to write the sex of the baby on a sheet of paper that would then be sealed in an envelope that they could open together at a later date.

It was May 18, 2016, the day of Ashley's gender reveal appointment. Just moments before the sonographer entered the room, Ashley and her husband excitedly discussed several restaurants where they could open the envelope. "We were still reeling with anticipation even as the sonographer began the ultrasound," Ashley recalls. But suddenly the sonographer became quiet and a heaviness came over the room. "I remember her continuously trying to shift and rotate the baby," her husband explained, "She kept saying she needed to get a closer look." The couple asked if the baby was ok, and inquired if everything was normal. The nurse re-assured them that everything was fine, but quickly left after explaining they might need to come back for a follow-up visit so she could get a better look.

Ashley got dressed and they eagerly waited for the doctor. Ashley immediately began sinking deeper and deeper into a state of sheer panic, but her husband did his best to console her. Their fears were realized when the doctor entered the room and began sincerely apologizing before diagnosing Baby Harding with various things like neural tube defect, hydrocephalus, myelomeningocele, spina bifida, paralysis, and bladder and bowel incontinence.

The doctor explained they would have to go see a specialist, and Ashley tried to muster up a few questions. Despite the doctor's answers, the couple didn't hear a word because they were both in complete shock. Upon leaving the office, Ashley finally broke down in the parking lot, realizing the life she envisioned for their baby and family would never be the same. Both understood in that very moment that their lives were forever changed.

That night, despite the painful news, Ashley and her husband found a quiet place in their home where they could open the envelope. They were having a boy.

YOU HAVE 3 OPTIONS | May 20, 2016

The next 48 hours were a complete blur. Ashley and her husband spent countless hours scouring the internet, searching for answers. Fortunately, there is a LOT of information on the internet about such diagnoses! Unfortunately, there is a LOT of information on the internet about such diagnoses! Some cases showed babies with simple skin issues and full brain function, while others showed fully crippled babies and even death. While the internet was a great resource, it was overwhelming. Luckily, they recalled the doctor explaining that while the internet can be helpful, they shouldn't feel discouraged by what they find because much of the information on the web is terrifying, outdated, and sometimes even inaccurate.

After meeting with the specialist, their biggest fears were confirmed. Baby Harding was diagnosed with a more severe form of spina bifida, known as myelomeningocele.

Myelomeningocele

Via spinabifida.net

Myelomeningocele is a defect of the backbone (spine) and spinal cord. Before birth, the baby's backbone, spinal cord and the structure they float in (spinal canal) do not form or close normally. Myelomeningocele is the most serious form of spina bifida.

Statistics for Spina Bifida in the United States

According to a study released in December 2015 by the Center for Disease Control and Prevention:

•1500 babies are born with spina bifida every year

•Hispanic: 3.80 cases for every 10,000 births

•Non-Hispanic black / African-American: 2.73 cases for every 10,000 births

•Non-Hispanic white: 3.09 for every 10,000 births

Based on where the lesion was, at the L3 vertebrae, Baby Harding was likely to face significant challenges. Due to the myelomeningocele, his brain was being pulled down his spine, causing what is known as hindbrain herniation. His ventricles (hollow cavities in the brain) were also enlarged beyond what is normal for a baby. In addition, one of his feet was clubbed, an indication of the effects of the neural tube defect (7 out of every 10,000 births in the United States).

The specialist gave the couple 3 options: 1) terminate 2) fetal surgery 3) post natal closure of the spine. As strong followers of Christ, Ashley and her husband eliminated termination as an option. They learned that fetal surgery was a risky operation for both baby and mom, but that the surgery could significantly improve Baby Harding's quality of life. Lastly, post natal closure of the spine would weaken Baby Harding's chances of overcoming the side effects of spina bifida he was facing. The decision was clear: fetal surgery was their number 1 choice.

What is Fetal Surgery?

Fetal surgery is in-utero surgery in which an incision is made in the uterus. Fluid is then inserted into the uterus so the fetus floats to the top, exposing the spina bifida. Doctors then repair the wound and stitch the uterus back up.

What are the risks of fetal surgery?

•Infection of the incision or lining of the uterus

•Premature labor and delivery

•Bleeding

•Gestational diabetes

•Leakage of amniotic fluid

•Infertility

•Complications associated with anesthesia

•Death

As families across America fired up their grills for Memorial Day weekend, Ashley and her husband flew to the Children's Hospital of Philadelphia (CHOP) where they prayed they would qualify for fetal surgery. God was listening. Despite the long list of factors that could disqualify Baby Harding and Ashley, CHOP approved the surgery and the date was set.

62 MINUTES | June 10, 2016

"That's how long I waited," her husband explained, tears welling up in his eyes, "I waited 62 minutes to find out if my wife and son had made it through the surgery, and if everything had gone according to plan."

It took a team of 7 doctors, 10 nurses, and 4 anesthesiologists to perform Ashley's fetal surgery. 62 minutes after Ashley was rolled out of sight for surgery, her doctors emerged and happily reported to her husband that the surgery was successful, and the hole in Baby Harding's spine was repaired. After some much-needed rest and a few weeks of healing, Ashley and Baby Harding made full recoveries with no complications. All that remains from the surgery are lifelong reminders: a scar on Ashley's abdomen that is slightly higher and longer than a caesarean scar, and another matching scar along Baby Harding's spine.

BORN AGAIN | September 15, 2016

Doctors who perform fetal surgery say each baby is born twice; once during surgery, and again at the time of delivery. Ashley and her husband are scheduled for a C-section on the morning of September 15, 2016.

"There is still so much we don't know, and won't know until Baby Harding arrives," Ashley's husband explained, "There are still so many blank pages in this book, and so much yet to come. This experience has forced us to change our perspective and expectations for the life of our baby. I still don't know if we'll play ball, run together, or do the normal things most Dads and sons do," he said while wiping tears from his cheeks, "But he's been passing his bio-physical tests like a champ! And that gives me hope. My new perspective has been: none of that matters, because I'm going to love him either way. God has given us this amazing gift of life and I trust His plan for our child."

During Ashley's last 2 check-ups, Baby Harding successfully passed his bio-physical profile. During a biophysical profile, a baby's heart rate, breathing, movements, muscle tone and amniotic fluid level are evaluated. Baby Harding's ventricles also either shrunk or maintained the same size from his previous check-up. He even wiggled his ankles and toes for mom and dad on the screen!

"There are few words to describe the excitement we feel to welcome Baby Harding into this world. This experience has brought us closer together, and shown us how to slow down and appreciate life. There's been a lot of sleepless nights, anxiety, fear, and hopelessness. But we've put our full faith in God, and we trust His plan for our family," Ashley smiled.

The couple's family and friends have organized a crowdfunding site through YouCaring to help raise funds for this next chapter in their lives. So far, they have raised $2,995 of their $10,000 goal. To donate, find out more, or read a personal account of these events from Ashley herself, please click here: http://bit.ly/2c8JsjH

SOURCES

http://www.cdc.gov/ncbddd/spinabifida/data.html

http://www.mater.org.au/Home/News/July-2016/Mater-undertakes-Australian-first-in-utero-spinal

https://en.wikipedia.org/wiki/Spina_bifida

https://www.youcaring.com/baby-harding-617893

#spinabifida #myelomeningocele #spina #bifida #hydrocephalus #birthdefect #birth #defect #paralysis #fetalsurgery #fetal #surgery #CHOP #faith #hope #God #pregnancy #complications

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