Miracle Baby with Spina Bifida: One Step at a Time

Beth’s face was peaceful as she rubbed her belly and shared solemn news of this pregnancy with me. Her third little one was expected to face serious obstacles including spina bifida and hydrocephalus. A wee one who had not yet taken his first breath already had many strikes against him.

While doctors suggested an abortion multiple times, Bethany and Andrew Prashad held firmly in their faith to the belief that every life is precious. They believed for a miracle but did not know what that miracle might look like.

They were prepared to fight for the life and health of this little one. She emphasized, “We didn’t need to fix him. We just needed to give him his best chance.”

Doctors predicted this baby would have no leg movement and no function at all below the waist. But Ezra defied those odds immediately and wiggled his foot as a newborn. His father, Andrew, says that moment filled him with hope.

On his first day outside his mommy’s womb, Ezra faced surgery to close the opening in his back. The early days were difficult. Each newborn feeding also included lengthy catheterizations. And Ezra often got bladder infections from the catheter. Beth and Andrew were tag-teaming and sleeping in short intervals.

But I would see Beth after a rough night, bringing her two girls for swimming lessons, and she still smiled. She even glowed, staring at Ezra’s sweet little face as she snuggled him in his wrap.

Love is like that. It can surpass exhaustion. It allows you to push beyond normal human limitations and offers a strength you did not know you had.

I met with Bethany recently, to get an update about their little miracle boy. Settle in and listen to her journey.

Naming Ezra early in the pregnancy

Every ultrasound and doctor’s appointment revealed further complications for our little boy. We found ourselves leaving the clinics feeling more and more discouraged about his future. While I nurtured this life inside me, I needed to connect to our boy in a meaningful way.  I needed him to be more than a diagnosis – I needed our son to have a name.

Our older two daughters have names that mean Grace & Beauty and Wisdom & Strength. We chose the first name Ezra (which means helper) and gave him Courage as his middle name. His destiny is to be a courageous helper and we have already seen him living up to that.

To parents who have just received a similar diagnosis

Even though the news is scary, you will be amazed at where this baby with spina bifida will lead you. We have met some of the most incredible people through our journey – people who really cared and touched our hearts.

I would offer hope that most parents of kids with spina bifida have been amazed at how much their children accomplish. Doctors are obligated to provide realistic information, but that also includes worst-case scenarios and many children outperform their diagnosis.

I would beg parents to choose life. Once spina bifida is diagnosed, an abortion will be offered. What a difficult decision to make at the height of stress. Research the success stories and the miracles. Find a support group and soak in the encouragement. Cherish this precious little life that is a miracle already forming. You need a strong community of support to get through these times of uncertainty and fear. Don’t stop until you find these people.

Spina bifida is tough at the beginning and during transition times but don’t despair. There was a period of time where Ezra would develop repeated infections from catheterization. All we could do was simply take the next step caring for him and rely on our support team as we took him back and forth to Sick Kids Hospital many times.

Here is Ezra’s debut appearance on Life of Dad’s video. At the time of this publication, this video has almost 12 million views. You will adore this boy.

 

Favourite moments with Ezra

There are so many. Every milestone he meets is a celebration. When he wiggled his toe as a newborn. When he defied all odds and started crawling, then weight bearing, then walking with a walker. How he interacts with his support team of physiotherapists, speech therapists and occupational therapists. Watching the special bond he has with his Dad.

I love how his sisters interact with him. Nyasha teaches other kids to play with him – to not go too fast, and to let Ezra catch them sometimes.

We had been told there would be speech delays, but he surprised us there too. Sitting across from him at the table, he said one of his first long sentences, “I want a cup of tea.” And his sweet, booming voice makes me smile. [see their adorable interaction here]

How can we best support families facing similar challenges?

We were told by professionals that we would lose friends who couldn’t handle the intensity of our journey, but that has not been the case. Being matter of fact when discussing Ezra’s challenges with spina bifida and hydrocephalus allows others to speak candidly and ask questions comfortably. This has broken down barriers that may have been there if we tiptoed around Ezra’s diagnosis.

We cherish the friends who let us cry after our early appointments. Friendship can be simple and messy and meaningful. We are also blessed with family who faithfully step in whenever we need help.

So many friends would say, “Let me know what I can do to help”  but I would encourage people to be specific about what they are offering. Offer to watch the kids, to get a gift card, to help with bedtime or to make a meal. Also, be specific about how much time you can offer. Once a week? Once a month? In an emergency? We want people to help in a way that brings them joy and uses their strengths, so specific suggestions are really helpful. And we understand if people do not feel comfortable watching Ezra, or if they need more information before agreeing to care for him.

How has Ezra changed your family?

All parents celebrate their child’s milestones, but when children have special needs, every accomplishment is amplified. Your whole family will become part of this child’s story and part of the everyday miracles.

Adding any baby to a family can strain a marriage but that was not the case with Ezra. With our third, and his challenges, Andy and I knew we had to work as a team and to rely on each other completely. Ezra brought us closer together even during those exhausting early days.

Before Ezra was born, I asked a counsellor how I would make sure my daughters don’t feel neglected. She assured me that just asking that question showed the girls would be fine. Sometimes it is tough juggling everything, but one-on-one time with each child helps a lot.

Ezra’s sisters love him to pieces. They have more awareness of finding joy in the small things. Ezra used to call Sophia “Fifi” and one morning he proclaimed from his crib, “So-phiiii-aaaa.” She squealed, “Mom. Ezra said my WHOLE name – it’s the best day ever.” I will never forget that.

Both girls have said they will learn to catheterize him one day. They care about him deeply and are so tender with him. Because of their relationships, they have become more mature and empathetic.

Nyasha recently said, “Mom. There is a boy in my class who is needed.” What a beautiful way to express how anyone with special needs can impact their world.

Ezra has met so many milestones and shocked his support team. He began crawling at 11 months, weight bearing at 12 months and taking steps at 18 months. By two years, Ezra learned to navigate steps with a walker. We all marvel at his determination. He is self-motivated and picks things up quickly. With his brand new walker, he wobbled unsteadily at first but mastered it by his second attempt. He now speeds up and down the halls at Sick Kids during  follow-up appointments.

How has your faith impacted your journey?

Right from the beginning, people would ask how I was not falling apart. I kept clinging to the verse, “My grace is sufficient for you, for my power is made perfect in your weakness.” 2 Corinthians 12:9

During our darkest, scariest moments, we never felt alone. The medical staff cared so lovingly for Ezra, and that felt like God caring for us during those times.

Even something as simple as my early days of nursing in the hospital proved this was true. The breastfeeding was not going well and I desperately needed cream but couldn’t leave Ezra’s room to get it. A nurse showed up at my room with a sample of cream and asked if I happened to need some. God cares for us in the small details, every step of the way. 

Our faith carried us when Ezra needed brain surgery at seven months old. They had to reduce the fluid build up in his ventricles. It lasted five hours and was a heart-wrenching time. We were so thankful he came through that and recovered well.

I know Ezra is going to change his world. From the time he was itty bitty he drew people to himself. He is magnetic, with a joy-filled face and a loud booming voice. I pray he will discover his impact, one step at a time.

I pray Bethany’s story will encourage you to take the next brave step. To cling to hope and not be overwhelmed by the big picture. Gather a team so your journey will not be lonely. I pray that God will make His peace very real to you. Peace only He can offer that goes beyond the most challenging situations. Philippians 4:7

Will you share your own challenges or celebrations with us below?

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