By Liana Jacob
THIS MUM was labelled SELFISH by strangers after deciding not to ABORT her baby who doctors warned could be born BRAIN DEAD – and now there is a FIFTY PER CENT chance that her next child could be also be born paralysed.
At her 20-week scan, stay-at-home mum, Crystal Ortiz (27) from New Jersey, USA, was told that her baby would be born with spina bifida, a type of neural tube defect where a baby’s spine and spinal cord don’t develop fully in the womb, causing a gap in the spine.
Crystal’s doctor told her that her baby, Riley (1) would be born either severely disabled or brain dead and advised her to have an abortion and to try to conceive again.
The mere idea of abortion horrified Crystal and she firmly asked the doctor to leave and find them another specialist. While they were initially worried about being good parents to Riley, Crystal and her husband, Bryan (30) decided to fight for their baby no matter what the outcome would be.
The lead up to her birth caused them to feel scared that they wouldn’t be good enough for her, but in July 2017 when Riley was born and she locked eyes with Crystal, all her worries melted away. Due to her spinal defect, Riley was born paralysed from her ankles down with low muscle tone from her hips down, which means she has to use a walker.
She has had numerous operations including three brain surgeries and one foot surgery. When she was pregnant with Riley, she was accused by a stranger of being ‘selfish’ for not aborting Riley.
Despite all of the criticism she has received, she has no regrets for keeping Riley and says that her sweet and brave nature has impacted so many families. She now says that she wants Riley to have a brother or sister and that even though there is a 50 per cent chance they could also have the same condition; this won’t let her stop living her life.
“Riley was diagnosed with Spina Bifida Myelomeningocele. Her lesion is L4-L5 which affects nerves, motors, bladder/bowel functions, and feelings from hips down,” Crystal said.
“I found out about Riley when I was twenty weeks pregnant. My husband and I had a conversation beforehand that whatever the outcome was, we would fight for our baby and parent to the best of our abilities.
“The specialist walked in and hovered over a spot on the baby. She said, ‘Congratulations you are having a girl, but she will be coming out either severely delayed or brain dead. Her lesion tells me that she also will be fully paralysed or paralysed from hips down. You guys are young and can try again. I advise you abort’.
“The list went on and on about the negative things our sweet girl was going to be born with. He then proceeded to say, ‘if you would like to keep ‘it’ then we need to immediately do an amniocentesis test right now to see what other defects your child will be born with’.
“I yelled and told him to leave the room; I remember looking at my husband both of us crying but then also remembering what our plan was no matter the outcome.
“When the doctor returned to the room, we told him we will be keeping her and that we did not want him working with us and to find us a facility or hospital that will work with us.
“We then ended up in Children’s Hospital of Philadelphia where they fought right by our side for our beautiful baby girl.
“We found out about Riley before she was born but we felt scared, we felt like we weren’t going to be good enough for her, we were afraid we would fail her.
“The moment Riley and I locked eyes, all the worry and doubt I was feeling went away. I fell in love and she instantly gave me a sense of courage that I was going to be great at this thing called parenting. I’m sure my husband felt the same way.
“As parents our minds go crazy; will she need another surgery, will she be able to control her bladder as she gets older, how are we going to pay for all these medical bills.
“The concerns grow daily but I think what helps is not letting the concerns consume us. We take each day one day at a time and attack each obstacle as they come.”
It is not confirmed what causes spina bifida, but a lack of folic acid before and in the early stages of pregnancy is a key risk factor.
Myelomeningocele is the most severe type of spina bifida, where the baby’s spinal canal remains open along several vertebrae in the back, which allows the spinal cord and protective membranes around it to push out and form a sac in the baby’s back.
Symptoms of this condition can be weakness or total paralysis of the legs, bowel incontinence and urinary incontinence and/or loss of skin sensation in the legs and around the bottom.
Riley has also developed hydrocephalus as a result of her spina bifida, a build-up of fluid on the brain which can further damage the brain.
As a way to cope with the uncertainties, Crystal felt it important to document Riley’s journey on social media.
“In finding out about Riley I instantly felt like we needed an army of people with faith. Faith that Riley would not be what the doctors said she would be, faith that Riley wouldn’t be one-hundred percent paralysed,” she said.
“So, we began to share Riley’s story from pregnancy to birth and beyond on our page. We didn’t know that within that time we would encounter people from all over the world, families going through similar situations and just wanted prayer.
“I remember the many nights of feeling alone, feeling like it was my fault, my body couldn’t help Riley grow properly and I remember searching for other mums who understood me.
“In sharing Riley’s story mums found me, and that’s when I knew I needed to continue to share Riley’s story to give other families that same hope and faith I was once looking for.
“One comment when I was pregnant was that I was selfish to not abort her and to want to bring her into this world to live a horrible life.
“If I would have let ignorance take control of our decisions Riley wouldn’t have impacted so many lives. This little girl has reached families in South Africa, Philippines, Iran.
“She’s instilled a beautiful sense of hope in families who didn’t think they could ever feel hopeful. The comment hurt me, but it also pushed me, pushed me to prove the world wrong.
“Some days are harder than others, but I feel blessed to be Riley’s mum. She has taught me so much; how to truly love and how to truly be happy.
“I do think she’s too young to understand but I do feel that Riley doesn’t look at herself as different. She sees no difference; she interacts and explores like any other child.
“Sometimes we get the common question ‘why does she need that walker?’ or ‘why does she have braces on?’ We answer them truthfully.
“The kids take it in well and that just goes to show that their parents are raising them well, to see no difference, to not be afraid of someone with a little extra superpowers.
“I will be home schooling Riley until nursery and hoping to give her a baby brother or sister within the next few years.
“I do have a fifty percent chance of having another child with spina bifida but this time around we know what to expect and I can’t let that hinder me from giving Riley a sibling. We can’t let fear stop us from living out our life.
“Don’t give up, I promise it gets easier. The love that these little warriors show us is worth every tear and doubt. Also don’t listen to anyone else’s opinion.
“We had many who doubted Riley before she made an appearance on this world, but we didn’t let that stop us, we overcame it and had our beautiful angel.”