Toddler With Rare ‘Microcephaly’ Charms His Loving Family, Who Hope Others Can See Past His Disability As They Do

By Scott Thompson

 

MEET THE brave mum whose son was born with a condition that means his brain and head is much smaller than other babies his age but hopes people see past his disability and treat him with the same love and respect they would any other child.

Stay at home mum, Rachel Taylor (37) and financial analyst Josh Taylor (36) from Provo, Utah, USA were married in May 2006, and like many married couples were really looking forward to starting their own family.

The couple were struggling to conceive, and it took them eight years of holistic therapies such as herbal medications, acupuncture, chiropractic therapy and changes in their diet such as removing gluten and going paleo to finally become pregnant with their first child Cordelia who is now four years old.

Then on March 18, 2019 Rachel gave birth to her second child, Grayson, but there were complications. The medical team noticed that he wasn’t breathing properly, and they used a vacuum pump to deliver him as quickly as possible meaning a speedy 90-minute labour.

Sadly, this caused damage to his head, leaving, and Grayson’s face was bruised and swollen. However, the doctors checked for any internal bleeding and had no further concerns about his overall health.

At his two-week check-up Rachel pointed out her worries about the shape of his head as it wasn’t improving. The doctor also said his head was measuring small. They performed a CT scan to see if his skull was prematurely fusing, which it wasn’t but after conducting more tests an MRI scan showed that his brain was smaller than normal, and he was diagnosed with microcephaly.

Grayson also had two auditory tests which showed moderate to severe hearing loss in his left ear, which was then normal a month later. The ear, nose and throat (ENT) department found he had silent reflux and micro aspirations that were making him cough and choke on his food.

He then started having seizures and he had a chest x-ray and an electrocardiogram (ECG) to check his lungs and heart were all ok – the results came back normal.

“I’ve been infertile for 12 long years combined. The first stretch was eight frustrating years. I’d tried herbal medicine, acupuncture and chiropractic therapy. I even tried changing my diet by going paleo and removing gluten.

“For the first few years, each new month would make me frustrated. I cried a lot. My husband tried to reassure me by telling me that he believed we would one day be able to have kids. I was able to stay positive for the most part. But as the years went on, I gave up on that hope,” Rachel said.

“It was extremely difficult to be around friends who were having babies. I tried to be happy for them but found myself withdrawing more and more. I didn’t want to be around children. I didn’t want to be invited to baby showers.

“I’d get so angry when I’d hear stories of child abuse. I remember thinking, ‘if you don’t want your children, I’ll take them!’ It was so unfair. I had always dreamed of becoming a mother, and it’s so hard to see that slip away and not have any control.

“I was elated when I found out I was pregnant with Cordelia and then really surprised when I became pregnant again with Grayson.

“Just before Grayson was born the doctors noticed he wasn’t breathing well, and they needed to get him out ASAP. They decided to try a vacuum pump before resorting to a c-section and that was enough. I was only in labour for 90 minutes.

“That hour and a half had given my little boy a really hard time and the poor little fella looked really beaten up, his face was bruised and swollen, and he had a lump on his head. The doctors monitored him but didn’t seem too concerned. This helped me feel a bit better about the swelling and bruising.

“At his two-week check-up I told the doctor I was worried about his head as it was still not improving. The doctor agreed with me and was concerned about microcephaly and craniosynostosis (where the sutures in the skull fuse prematurely). He sent us for a CT scan. The scan showed that his sutures had not yet started to fuse, but they said his brain looked small and they wanted to do an MRI to get more information. The MRI showed that his brain was much smaller than other babies his age. He also has a simplified gyral pattern and pontine hypoplasia (underdeveloped pons on the brainstem).

“He has had 2 ABR tests (auditory brainstem response). The first one came back saying that he had moderate to severe hearing loss in his left ear. When they tested him again a month later, they found no hearing loss.

“He saw an ENT who observed some feeding issues (coughing/choking frequently), and he ordered a barium swallow study. That showed that he had silent reflux and silent micro aspirations.

“Then he started having seizures, they did a chest x-ray and an EKG to make sure his lungs and heart looked ok. Both tests came back normal.

“We are currently awaiting the results of genetic testing to come back to help us determine what caused the microcephaly.”

As a loving mother, Rachel has found it difficult watching her child go through so many tests at such a young age. She hates not having any solid answers yet.

Rachel admits that bonding with her baby son has been difficult. She keeps her guard up as she worries being given the news that he will be suddenly taken away from them.

“It’s been incredibly difficult watching my little baby go through so much testing. The MRI was the worst as he was sedated and struggled to come out of sedation. Being so young he doesn’t understand what’s going on around him. During tests we can’t always be with him but can hear him crying from outside and it’s just heart wrenching,” she continued.

“I’m living in a whirlwind of emotions. The hardest part has been not knowing what’s wrong with him. It’s making bonding with my baby incredibly difficult. Much more so than with our Cordelia. Obviously, we have had to grieve for the life we thought we would have. We are having to find a new normal, but I keep my guard up because I’m always worried that I’ll be given news that we will lose our son.”

Although she’s only four years old, Cordelia has been an amazing big sister. She sees past his imperfections and has been very loving and caring towards him. Rachel wishes everyone else saw Grayson the same way Cordelia does.

“Cordelia was a little concerned about Grayson at first, but to her he’s just her baby brother. She’s gentle with him and loves him very much. She’s also very proud and loves to show him off to her friends by saying ‘isn’t he so cute?’,” she said.

“She comes to check on him every morning and give him a cuddle. She feeds him his bottle when he cries, she helps by getting his bottle or diapers, and insists she’s taking him to Disneyland very soon.

“I encourage everyone to try and see others the way my four-year-old sees them. She sees past the way people look. She doesn’t notice the disability or that they are different from her. She just sees how they are similar. She sees a new friend, someone to love.

“Everyone is special and amazing in their own way, and they deserve to be treated with love and respect. She understands how to love unconditionally. She has certainly taught me a thing or two and I truly want to be more like her in that respect.”