“I was a barely 21-year-old newlywed when I found out I was pregnant. I already had a 3-year-old son and a new stepson who was also 3. We were overjoyed. We knew a baby girl was exactly what our family was lacking, and we prayed so hard for her. The last day of my first trimester was when our joy came to a halt. I got out of bed and instantly blood began to gush. I screamed for my husband, Austin, and we headed straight to the emergency room. I remember the ultrasound technician’s words like it was yesterday, ‘The one thing I can tell you is there is a baby, and there is a heartbeat.’ Those words took a million pounds of weight off of my shoulders and sparked something that was much needed… hope. For the first time that day it was no longer sheer terror, there was the slightest bit of hope. A few hours later our less-than-great at bedside manner emergency doctor came in and told us my uterus was hemorrhaging, and the hematoma (blood pocket) was exponentially larger than the baby. In fact, it was the biggest one he’d ever seen. He told us (in mumbo jumbo medical terms) that I should take it easy, lay around in bed, and wait for my body to abort the baby. WHAT?! No. I refused to accept my baby who was still inside of me, and had a heartbeat, was just going to die.
I went home that evening on strict bedrest, and asked my mom to come to North Dakota from Texas to get my son because I wouldn’t be able to care for him from bed. I spent the rest of the night crying, and refusing to even look at the cradle next to my bed. I emotionally disconnected, and I stopped thinking about life with a baby. I just prayed for one more day. One more day before I had to experience the worst loss of my lifetime. I woke up that next morning and everything was okay, so I prayed for another, and another, until finally weeks had gone by – the bleeding had stopped and the baby was still nestled in my belly.
At 17 weeks we went in for an ultrasound where we found out we were getting the daughter we’d been praying so hard for, and that evening we took off to Texas to pick up my son from my parents, and my step son from his mom’s house. Finally, I was starting to allow a little bit more of that thing called hope. I bought her first outfit and began calling her by name, however there was still a big part of me that refused to allow myself to connect to this perfect girl I was carrying.
Shortly after returning to North Dakota we went in for our anatomy scan. The big on where they take forever and can’t tell you anything. My hematoma was much smaller, and our princess was still a girl, everything went great until a few days later when they called and asked me to come back in because they weren’t able to get good images of our daughter’s spine and kidneys. While that was definitely not a call we wanted, we knew it could be so much worse. Until the next day when my midwife called and asked me to come in immediately. My heart dropped. What could be wrong now? What more did God want to throw at us during this pregnancy?
Hydrocephalus. That’s the word she used after giving me a long hug and reassuring me that I didn’t need to panic. How could I not panic? You just told me that there is something wrong with my baby’s brain! She assured us the scans could be wrong, and the condition wasn’t serious or life threatening, however I would need to transfer to a high risk OB, and get a referral to maternal fetal medicine in a town about 2 hours away.
I know I shouldn’t have, but I read the full ultrasound report and started googling. I thrive on knowing as much information as possible to make an informed decision. They said things like ‘enlarged ventricles in the brain’ and ‘Choroid plexus cyst.’ I was panicking. Hard. We scheduled genetic blood testing and made an appointment with maternal fetal medicine where they did an extremely detailed ultrasound. We were told a few things… She had enlarged ventricles in her brain (but not severe enough to label as full hydrocephalus), one of her eye sockets was smaller than the other, and she had a hole in her heart called a Ventricle Septal Defect. They shuffled us into a room to video chat with a genetic counselor and talk about what it all meant, and what our options would be. We opted for an amniocentesis where they pull fluid from my belly to test for very specific abnormalities. We had to continue months of ultrasounds and following up with maternal fetal medicine and high risk OB as well as an unsuccessful MRI (thanks claustrophobia) and meetings with cardiology and Neurosurgery.
When I was about 36 weeks along, we were sent to a children’s hospital 4 hours away to stay until I could be induced at 39 weeks. The Air Force was so accommodating in allowing Austin to come stay out of town with me for so long. Things at that point were pretty normal. My mom came up to help with the kids and we just lived at the Ronald McDonald house and waited on our baby.
October 15, 2018. It happened to be our first anniversary and induction day. Our little spitfire was born fast and furious after an emotional labor and a failed epidural. They laid her on my chest and I couldn’t fathom the thought of ever letting go. Our sweet Awsten (Awty for short). The NICU cleared her to room with us and we spent the night loving on our sweet baby girl not knowing what the days ahead would bring.
The next day they took her for an MRI, an Echo of her heart, and other tests to see how she was doing. For the most part, she was in great shape and only experienced a few problems like spitting up a lot of fluid and not being able to nurse because it took too much effort and she would turn blue. At 2 days old she was taking pumped milk from a bottle like a champ. We were so in love, and nothing could change that.
We found out she’d be going home with us as long as all of her specialists cleared her for discharge. Cardiology let us know she was born with two extra arteries (a PDA and PDO) and her moderate VSD. This was the least of our concerns and expected to resolve on its own. Then came Neurosurgery… her MRI ruled out hydrocephalus, however she had colpocephaly, Choroid plexus cysts, complete Agenesis of the corpus callosum and several other neurological defects – plus scoliosis, one eye bigger than the other, and a sacral dimple. We had no idea what any of this meant and honestly none of our doctors did either. So we left.
On our 4 hour drive home I did my fair share of googling. I remember seeing a picture of a baby and instantly thinking ‘that’s it. Whatever that baby has, Awty has.’ I read the page to my mom and Austin and we decided I was crazy because the condition I was looking at, Aicardi Syndrome, was way too rare to be affecting our baby girl. The thought of this condition haunted me and kept me up at night for several days.
At 10 days old Awty was hospitalized with pneumonia. It was so unexpected, but mommy instinct knew something was wrong and surely it was.
After a week in the pediatric unit we went home and headed back to the children’s hospital to meet with the only pediatric neurologist in the state of North Dakota. After walking in and introducing himself, he kind of paused before asking, ‘have you ever heard of Aicardi Syndrome?’ My heart nearly stopped. There was no way.
- Agenesis of the corpus callosum
- Chorioretinal Lacunae
- Infantile Spasms
These three items are the triad of this rare disease. Surely she can’t have it if she only has one of the needed characteristics right? No one can diagnose this just on an MRI… right? Wrong. Neurology referred us to an eye doctor who confirmed Chorioretinal Lacunae… number 2 on the list. A couple of weeks later seizures started and after a week in the hospital we began new medication and headed to Texas for Christmas. Just days after returning home from Texas we settled in, began her occupational and physical therapy… and then there were more seizures, and this time it was Infantile spasms. The third item on the list. This wasn’t just any old seizure though, Infantile spasms cause serious damage leading to an array of neurological delays. We instantly began an intense round of steroids while in the hospital and the spasms slowly stopped, however the other seizures continued to get worse. The day we were released from the hospital we got news that the Air Force was sending us to live in Illinois to be closer to the medical teams available in St Louis. Answered Prayers!
And then a 14-minute tonic clonic seizure landed us back in the hospital. The seizures were getting worse as her body grows, and lasting longer. She reached the point of needing constant supervision to prevent aspiration when she seizes.
Awty’s condition is fragile and ever changing. She has constant seizures, limited vision, and mental and physical delays. The prognosis ranges from 100% disabled to minor delays and there is no way to predict what end of the spectrum she will end up on. We work with many doctors and therapists to give her the absolute best chance as developing her body and brain. At the end of February 2019, we arrived at Scott Air Force Base in Illinois, away from anyone and anything we know, with the one thing we’d been holding onto for so long… hope.
When Awty’s seizures reached the point where she requires constant supervision, we prayed about a service dog to help monitor her when we can’t have her in our sight 24/7. We were paired with an amazing breeder in Oklahoma and a professional trainer in St. Louis who will spend the next couple of years training our new pup to respond to Awty’s seizures, go get help when needed and assist with other tasks related to her disabilities.
When we were matched with a puppy, we knew her name almost instantly. Ophelia. It means, ‘She who helps’ and we truly believe she was sent to our family to help our daughter. Through some amazing people in our lives, and incredible gifts from strangers, we were able to raise funds for the first required payment to bring Ophelia home to us and begin training.
Just recently we got to meet Ophelia for the first time, and when we placed her with Awty, they were both instantly peaceful. They cuddled up close and both went fast asleep. It was in that moment we knew, they were made for each other.
We don’t know where this journey with Awty is taking us, or why we were chosen to be her parents, however we do know we absolutely love our daughter and we love seeing everything she’s able to accomplish. She is so incredibly strong and courageous and has beaten the odds so many times already. She is here for a reason and destined for greatness, and we are so grateful for everyone who has shown us that no matter how far we are from home, we are never alone.”
This story was submitted to Love What Matters by Ceasarae Galvan. You can follow Awty’s journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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‘In the coldest bedside manner, he said, ‘It is extremely rare and there is no cure. IF she lives, she will stop mentally developing at 2 months old.’ I just stared at him, my body slowly over heating.’
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