Baby Born With Brain Protruding From His Skull Is Thriving A Year After His Birth

By Rebecca Drew

 

 

THIS MUM was offered a termination when doctors discovered that her baby would be born with malformations to the brain and skull – but one year later, he’s thriving.

Stay at home mum, Omobola Gordon (25) who was born in London, UK, but grew up in Houston, Texas, USA, met her husband, Checotah (26) in 2012 and they always knew that they would have children together one day.

In early 2018, Omobola found out she was pregnant and for the first 20-weeks of her pregnancy everything seemed to be going smoothly. At her 20-week anatomy scan, medical staff were able to check that her baby’s heart, blood flow and kidneys were all normal and that the legs and abdomen were measuring fine, but they struggled to measure the baby’s head.

A few weeks later, Omobola went to one of her regular check-ups where doctors again struggled to be able to measure her baby’s head and they suspected that her unborn child might have Trisomy 18, a chromosomal condition associated with abnormalities in many parts of the body.

After this, Omobola was referred to a maternal-foetal specialist who told her that her child didn’t have Trisomy 18 but would likely be born with some malformations to the brain or skull. She was told that her baby could have microcephaly, a condition where a baby’s head grows much smaller than expected, or anencephaly, a condition where portions of the brain, skull, or scalp are absent, because the scan appeared to show an opening on the skull that was causing an encephalocele, where brain tissue protrudes outside of the skull.

Omobola and her husband were offered a termination, but they declined as they wouldn’t know for sure what was wrong with their baby until birth. The couple had to create a palliative care plan in the final weeks of pregnancy just in case their son wouldn’t be able to survive after being born.

On October 1, 2018, their son Ozzie was born weighing 7lb 5oz, with an encephalocele which covered a third of his face, but his skull was complete, only misshapen. Two days after giving birth the family were discharged from hospital with the support of hospice nurse visits. At four months old, Ozzie underwent surgery to remove his encephalocele and he has been defying the doctors ever since, has less check-ups and visits from nurses. Although he can’t crawl or toddle yet, he babbles and smiles like any baby, and Omobola says Ozzie’s star smile warms the hearts of everyone who meets him.

Omobola decided to share their journey on social media to help other families who have children with special needs and the support has been overwhelming. She hopes to show other families that miracles do happen and children with additional needs deserve just as much love as other children.

“When we conceived Ozzie in January of 2018, everything went smoothly for the most part until the twenty-week scan, when we learned that something may be wrong with Ozzie,” said Omobola.

“When Ozzie was first ‘diagnosed’ with microcephaly/anencephaly it was during our twenty-week anatomy scan. I put diagnosed in quotations because it wasn’t until he was actually born that we were able to see that he in fact had the malformations that the ultrasounds were showing.

“Really during my pregnancy doctors didn’t give us an absolute ‘this is what it is’ diagnosis just because all of my blood tests and genetic tests came back as normal and so they were just going off what we could visually see on the ultrasounds.

“Microcephaly is a small head that is a result of the malformation of the brain during pregnancy. In Ozzie’s case, doctors believe that he has anencephaly which is the underdevelopment of the brain but anencephaly also involved an incomplete skull which Ozzie does not have. Ozzie’s skull is complete, it is just misshapen.

“He is developmentally delayed. He doesn’t crawl or walk but he can babble up a storm and his smile warms anyone’s heart who witnesses it. He seems pretty content most days. He does suffer from seizures, but he is on medication to keep them under wraps.

“Tests have come back inconclusive as far as his vision and hearing are concerned but we notice that he does engage in what’s going on around him. He certainly has a sense of direction that you wouldn’t expect in babies like him to have, if I’m talking or making noise behind him you all see him turn around or look around to hear me.

“We are working on getting him back into an early childhood intervention physical therapy programme to help with his coordination and mobility.

“When he was first born, I came across an anencephaly website with people who had shared stories about their children and their experiences with the condition.

“For the first few months of Ozzie’s life, I was in a dark space both mentally and emotionally and I thought that sharing his story with other people would allow me to get out all the feelings that I had been keeping to myself.

“In hindsight I’m glad that I decided to share Ozzie’s story and tell people about what we were going through with him because the emotional support we have received has completely surpassed my expectations.

“I think that very often people think they are going through things alone and really it’s not until we speak up and people are more informed that they can then reach out and show you the love and support you didn’t know you needed.

“It is amazing to see strangers from other parts of the world reach out to me and say how much they are supporting us and praying for Ozzie. That feeling is just unbeatable.”

Ozzie does suffer from seizures and he is on medication to keep these under control, he also suffers with tight spasticity but is on muscle relaxers to help him be more flexible.

Omobola and Checotah are committed to giving Ozzie the best life possible for however long that may be and she hopes that by sharing their story he will be accepted by society regardless of looking different and says that people have thanked them for loving him so deeply.

“People are always telling us how much of a miracle and a blessing Ozzie is to our family. Surprisingly, people in public always have something positive to say,” she said.

“We do catch stares sometimes but I understand that people can be curious and shy to ask questions but we are always open to answering people’s questions about Oz and educating them as much as we can about his condition.

“We have had other special needs parents some that we know and some that we don’t know reach out to us and express their gratitude of us doing the right thing by Ozzie and being there for him and loving him the way we do.

“We really just hope to give him the best life possible. God willing, he lives a long time we strive to make it as normal as possible for him and to embrace his differences among his peers. We hope for him to be accepted by society regardless of him lacking a major part of his brain and looking different.

“We hope that he can be a vessel to touching people’s hearts and being an example that miracles do happen and special children deserve just as much love and care as other children.

“I just want families that are going through the same thing we’ve experienced to know that even though it may feel like it, they are not alone.

“Personally, we believe that our faith in God and in ourselves to do the right thing is what helped us get through the dark and overwhelming times.

“Also for first time mums going through something scary like this, there are communities of special needs families and mums to reach out to and don’t be afraid to seek them out.

“Some of the people closest to us may never know what it’s like to become a special needs parents so it’s always good to try to seek emotional and mental support from those that have been down this road before.”

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