My soul left my body as doctors revealed our unborn baby boy’s devastating diagnosis – but I refuse to give up on him
A MUM felt her “soul leave her body” as she was told of her unborn baby’s devastating diagnosis.
Madysen Wilcox experienced spotting when she was six weeks along, with doctors initially fearing she’d had a miscarriage.
Just a few weeks later, the 29-year-old mum was “blindsided” by a another devastating blow.
Madysen her husband, Darin, 34, were left dumbstruck when they were told that their baby’s brain had failed to form properly.
The mum-of-two, from Smithfield, Utah, USA, was so shocked by the diagnosis that she felt like she was undergoing an out-of-body experience.
She said: “Looking back on the day when we got the diagnosis, it felt like my soul left my body and I was watching myself react to the news.
“The ultrasound tech was very quiet for what felt like forever as she was looking at Charlie’s brain and heart.
“She then left to go get the doctor and he came in and told us the diagnosis.
“As soon as I heard it, it was at that moment, my soul left my body.
“The doctor told us the news, that his brain never formed into two hemispheres and his heart had some major defects as well. And that the diagnosis was fatal.”
Her unborn son, named Charlie, was diagnosed with Alobar Holoprosencephaly, a birth defect that means a baby’s brain doesn’t form properly or separate into right and left hemispheres.
The brain is normally divided into two halves, but they remain in contact and communication through nerve fibres.
The division allows the brain to process several pieces of information and perform several actions at once.
When your brain doesn’t divide properly in development, as in Holoprosencephaly, it causes several physical and neurological issues.
The condition is estimated to affect every one in 7,500 births, according to the NHS.
Many babies with the condition don’t survive full term.
Madysen and Darin were faced with an “impossible decision” as they were offered two options by doctors: either to terminate the pregnancy or to see it through.
After continuously switching between the two options, the couple at first decided to terminate the pregnancy immediately as they didn’t want their unborn son to suffer any longer.
But Madysen and her husband – who are devout Christians – soon felt this wasn’t the right decision for them.
The mum chose to carry baby Charlie to term, saying the decision helped bring the family closer together.
Madysen already share two children together, Hayvn, six, and Harvey, three. They aren’t sure how long Charlie will survive once he’s born.
Reflecting on her ordeal, Madysen explained: “We had been trying to get pregnant for almost a year and we finally found out we were pregnant in February 2024.
“We started to have some complications when I was about six weeks pregnant.
“I started having some spotting and bleeding and the doctors initially suspected a miscarriage.
What is holoprosencephaly?
There are three main types of holoprosencephaly:
- Alobar holoprosencephaly: This type means the fetal brain hasn’t divided into two hemispheres at all. It’s usually associated with severe facial deformities. Babies with this type of HPE are often stillborn or die shortly after birth.
- Semilobar holoprosencephaly: This type means the fetal brain has partially divided into two hemispheres.
- Lobar holoprosencephaly: This type means most of the fetal brain has separated into two hemispheres, but there’s an incomplete division of the two halves. This is the least severe form of oloprosencephaly.
Source: Cleveland Clinic
“My whole world felt like it was crashing down, and I was suffocating.
“It was all hitting me that we had just been told our baby will not survive.
“We went into that appointment suspecting Down Syndrome, not a fatal diagnosis.
“It was the last thing we ever expected to hear. The rest of that day, I just couldn’t stop crying, the tears felt like they would never stop.”
Madysen said that carrying Charlie full term had brought her and Darin closer together and helped her connect with other mums going through similar situations.
“Looking back, I can clearly see God’s hand in our lives and how he nudged us along to make the best decision for our family.
“Carrying Charlie has blessed me in more ways than I can count.
“He has brought me and Darin closer as a couple, he has brought us closer as a family.
“He’s also helped me connect with so many other wonderful mums who have been through something similar.”
But the mum still describes her pregnancy with Charlie as a “roller-coaster”.
Madysen said: “The roller coaster of emotions throughout this process has been exhausting.
“Prior to finding out Charlie’s official diagnosis, there were days where doctors told us things looked great and that everything was fine, then there were days where they were very concerned and we had to anxiously wait for test results, not knowing anything, and anticipating the worst.”
The mum is preparing herself for the agonising possibility of having to say goodbye to Charlie soon after he is born.
“Since his diagnosis is so rare, everything is a case-by-case scenario.
“So, we really have no idea how long he will live. We have had to prepare ourselves for every outcome basically.
“The hardest part with that is knowing we could meet him and immediately have to say goodbye.
“I was pregnant at the same time as two of my best friends this year and seeing them take home their healthy babies has been excruciating.”