Written from the Father’s perspective.
On March 1, 2025, Montie Lee Skaggs Jr. & his family experienced a shock that they had never been through before. We arrived at the hospital around 9am to induce birth to our daughter. Our daughter is our second child. Lennon Paul Skaggs was born on June 9, 2021 and is our first child. My wife, Kaila Lacey Krause, the most wonderful mother to our children, was excited to give birth once more.
After a few hours went by, it was time for my wife to get the epidural. Despite the epidural being completely botched and causing a pseudo natural birth, my wife was a trooper and pushed our beautiful daughter out in 3-4 pushes.
Just 2 hours before our daughter came out of my wife, we picked a name. Lucy Bella Skaggs.
I must share an important quick backstory before telling you what happened next. Around 33 weeks an ultrasound was done to check that everything was normal and our ultrasound tech was dead silent. Montie (Father) asked, “so this will be the last ultrasound as long as everything is normal right?”
“Yes…” the ultrasound tech replied. But we knew her attitude was not normal.
We left the ultrasound office and a few hours later our MyChart was updated. In the app it was stated that a small arachnoid cyst was found on our daughter’s brain. They reiterated that these are typically normal and do not result in any problems but it was recommended that we go into Chicago and get a fetal MRI to get a better view.
So we did just that. We went and got a fetal MRI on our unborn daughter’s brain.
5 painful days went by and we didn’t hear back from anyone. We were extremely nervous because even though they downplayed the cyst, it was incredibly scary to read the stories about people’s bad experiences with these cysts.
We decided to just call the office and ask what was going on. The office who completed the fetal MRI was completely shocked that we had not heard from our doctor yet, as they sent the fetal MRI results immediately after it was completed.
Our doctor sent us a message on MyChart, saying that it was confirmed an arachnoid cyst. But what she said next was completely shocking. She said that “the eyes were not well visualized and that although they recommended a cranial ultrasound, that they saw the eyes in previous ultrasounds so the cranial ultrasound was not necessary.”
We figured that they were talking about the eyes because they wanted to see the symmetry and features of her face because of the arachnoid cyst.
From here, they scheduled the induction and everything went forward as normal. Nothing at all was thought about the eyes thing because we had no idea what it meant.
Going back to the birth, Lucy Bella Skaggs was born at 7 pounds 7 ounces. Immediately I knew something was wrong. Her face didn’t look normal. Her forehead was covering up her eyes and the doctors said that it’s likely that she has some extra fat in her forehead and that she will open her eyes later.
I was extremely nervous because I thought her face was deformed due to the arachnoid cyst. I immediately requested to be transferred to a bigger hospital. We were supposed to have Lucy at the hospital in Chicago because it had additional specialists for further testing. But due to our doctor not taking the MRI results seriously, we were told to go have the kid at the smaller hospital in Aurora, IL.
But, due to the fact that everything about the birth and Lucy looked normal to them, there was no way to transfer us. An ambulance ride would not be covered by insurance and it would cost way too much money to just spend out of pocket for “no reason.”
As the night went on, I was googling “baby born without eyes” and the pictures made me sink into my chair harder than I ever have in my life.
Lucy looked exactly like those babies.
We woke up the next morning and it was time for Lucy’s MRI because of the arachnoid cyst.
After a couple hours, about 6 doctors and nurses plus our pediatrician walked through the doors.
They confirmed my suspicions. Lucy was born with bilateral anopthalmia. A rare genetic condition that caused her eyes to not develop including the optic nerves.
They told us they were very sorry, and that there was nothing that could be done to save her vision. “She will be blind forever,” they told us.
After the initial shock set in, we started to cry. Over the next 3-4 days, it was hard to spend an hour without crying. Although it’s totally acceptable and not difficult for a person to be blind in today’s age, we couldn’t help but be extremely sad for our daughter. Her life is going to be very hard and so is ours.
Thus begins our new life navigating a journey with a blind daughter and completely reworking our future plans.