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Jaxon Emmett Buell: Father of baby born with rare disorder responds to critics saying parents should have had abortion

Jaxon Buell's father said that some people had “completely misunderstood” his son's condition

Alexandra Sims
Monday 28 September 2015 13:37 BST
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Jaxon turned one in August after doctors gave him just days to live due to a rare neural-tube condition called Microhydranencephaly
Jaxon turned one in August after doctors gave him just days to live due to a rare neural-tube condition called Microhydranencephaly (The Buell family/Facebook)

The father of a baby who celebrated his first birthday despite being born with a rare birth defect has responded to critics saying the family should have aborted the infant.

Jaxon Buell turned one in August after doctors gave him just days to live when he was born with a rare neural-tube condition called Microhydranencephaly meaning most of his brain and skull are missing.

The milestone was widely reported on and now Jaxon's parents, Brandon and Brittany Buell, have posted an update on Facebook defending themselves against accusations they have behaved selfishly for not aborting the child thereby preventing him from suffering pain and living a restricted life as he grows older.

He wrote: "I will never understand how choosing to carry Jaxon and give him a chance to survive could ever be considered “selfish”. How is killing him immediately the better alternative, when no doctor could give us a reason to do so? When did choosing life become the selfish and condemned choice of this never-ending debate that we have somehow found ourselves in, simply for giving our baby a chance to live and not have to wonder “what if?

"It’s normal to look at Jaxon and see a perfectly created boy and other babies truly do look weird and oversized to us."

Jaxon’s disorder was discovered during Mrs Buell’s pregnancy and the couple were given the option to abort at 23 weeks, however Mr Buell defended the couple’s decision to keep their son saying: “We did make sure to ask if Jaxon was in pain or was suffering, and we asked if there were any added risks for Brittany during the pregnancy or potentially at time of delivery.”

“Since the answer to both questions was ‘no’, we never came close to considering abortion.”

One in 4,859 babies in the US are born with Microhydranencephaly each year (The Buell family/Facebook)

Mr Buell has said that the family’s religious beliefs did not affect their decision to keep Jaxon.

“Yes, we are Christians,” said Mr Buell, “but we’re still realists. Had there been any suffering in the womb or a danger involved because of the concern for his head and brain, then we certainly would have had a different discussion.”

He added that Jaxon’s condition had been “completely misunderstood” by some who have read about him.

“There are cases of Microhydranencephaly children who have lived into their 30’s, have lived relatively normal lives, can learn to swim, and have and can use their senses, as well,” said Mr Buell.

“Yes, there will be difficulties and struggles and limitations, but they recognize their family, they learn to communicate, and Jaxon is certainly on his way in all of those aspects.”

Responding to criticism that his family are befitting from a GoFundMe page, which has now raised just over £41,800, Mr Buell said the page was created by a former college to replace his wife’s salary.

“The longer we can afford to keep Brittany home with Jaxon, the longer he can remain stimulated from that priceless mother-to-son relationship that no one else can give, and is one of the main reasons we believe that Jaxon is still here with us and is doing as well as he is,” he said.

One in 4,859 babies in the US are born with Microhydranencephaly each year, but most die soon after birth.

Signs of the condition include severe microcephaly, ridges on the scalp, and severe developmental delays.

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