Two weeks ago today, life was completely normal. I had two beautiful, seemingly healthy little girls, stressed out only over little things like keeping the house clean, and had just made the decision to quit my part-time job to be at home full time with my babies. Even though I had a three year old and a newborn, life wasn’t as hard as I thought it was going to be.
Sadie was proving herself to be the perfect baby. She’s a great sleeper, only fusses when she really needs something, gives out smiles constantly, is extremely laid back, and just has the sweetest little personality. All babies are sweet, but there’s just something special about her- it’s as if God gave her a little extra sprinkling of sugar when He made her. If all babies were as easy as she is, I wouldn’t be able to stop having them!
A few weeks ago I started to notice that Sadie had a really exaggerated startle reflex. At times, she would do it over and over again, even if there was nothing around to give her a reason to. Her eyes would get really wide when her arms went out, almost like she was scared of something. Carli never did anything like that, but I just figured Sadie was really sensitive. Babies have such an underdeveloped nervous system anyways and make weird movements all the time. I didn’t think anything of it.
My mom visited a couple weeks ago, and she also noticed Sadie making these movements. She also thought she was just doing the startle reflex all newborns do, but thought it was odd that she would do it numerous times before she stopped. Again, we just blamed it on an underdeveloped nervous system and normal reflexes.
Not long after my mom left I noticed that before Sadie started these weird jerky reflexes, she would squint her eyes, then would go cross-eyed for a few seconds before being able to re-open them. New babies have a hard time focusing, but it struck me as odd. I asked a group of girlfriends about all these weird things she was doing, telling them it was as if she was having little seizures. I didn’t actually think they were seizures, but it was the only word I could think of to describe it. A friend of mine (who is a nurse) told me that a seizure wouldn’t stop if I pick her up. I thought surely she would stop flailing her arms if I picked her up, so I tried the next day when she started doing it after waking from a nap. I held her tight and her arms wouldn’t stop making those movements. That’s when I knew something was wrong.
So I did what all worried moms do. I googled. Somehow my google search led me to a condition called “Infantile Spasms.” The more I read, the more I was trying to convince myself that she didn’t have it. There was no way my baby could have something this horribly wrong with her. It’s a rare type of seizure disorder, found only in infants, that causes significant brain damage. Most babies who have this (90%) go on to have severe developmental and cognitive delays. More than 50% of babies with Infantile Spasms will suffer from some other sort of epilepsy later in life.
After I found this scary diagnosis, I do what I always do when I’m worried one of my kids has something horribly wrong with them. Look for a reason she wouldn’t have this- so I kept googling. The description of the spasms didn’t sound like the movements she made. However, when I found YouTube videos of babies with infantile spasms, my heart sank. Their movements were almost identical to Sadie’s.
I showed Nick, and he agreed that our daughter could most definitely have this. I made an appointment with her pediatrician the next day, who set us up with an EEG and referred us to a neurologist. Unfortunately, as with most specialists, we weren’t able to get her seen by a pediatric neurologist for another 3 weeks. Our pediatrician thought the movements might be caused by silent reflux, and prescribed Zantec. I was hopeful she was right, but my gut just told me differently.
24 hours after our pediatrician appointment, Sadie had several more episodes. I didn’t feel like we could wait three more weeks for answers, so I took her to the emergency room at Children’s Healthcare of Atlanta. My husband and I both decided it was worth the $100 copay just to give us a peace of mind that nothing was horribly wrong with her. As soon as the ER physician saw a video that I took of Sadie having one of her episodes, he brought a neurology team in to look at her. Within an hour she was admitted and hooked up to an EEG.
That whole evening was a blur. I hadn’t prepared myself at all to be admitted, and I definitely hadn’t prepared myself for the worried looks on the doctors faces and the sense of urgency they had. I had fully expected to be sent home, feeling silly that I drove my baby to an emergency room an hour away just to be told she has really bad reflux. I called Nick, and he left work to come be with us at the hospital. His parents just so happened to be in town that weekend, so Carli was taken care of. My good friend Holli brought me clothes, my toothbrush and a few other things at home to get me through the night. I remember sitting in the hospital room with her, eating Chickfila and trying to talk about anything but what was actually happening. I had no idea what the tests that were being run on Sadie would find, and I didn’t want to even think about it.
I got about 30 minutes of sleep that night. Sadie had several seizures, and my heart was breaking every time. It was so hard to see her, lying in a hospital bed with electrodes glued to her head and wires connecting her to a machine. I wanted to be able to make everything better, just like I do with my older daughter. Clean it, kiss it, and put a band-aid on it. But this was a boo boo I couldn’t fix.
The next morning she had an MRI, and that moment was one of the hardest moments to get through. The doctor warned me that I may not want to be with her while she was being sedated because it can be a pretty big shock. There was no way I was going to let her be sedated without me in there with her. Right before the doctor injected the propofol into her IV, she started getting fussy- poor thing was so hungry! It had been almost 10 hours since she was last able to eat. Within a matter of seconds of the getting the propofol, she immediately stopped fussing and became pale and completely limp. It broke me to see her that way. As I watched her tiny little body be placed into the big MRI machine I wanted so bad to take her away from that room and just run as fast as I could with her out of the hospital.
I called my mom as soon as I got back to our little waiting room. I remember crying so hard I could barely speak. I didn’t want them to find anything on the MRI, but at the same time I was slightly hopeful they would. I had gone through different diagnoses in my head, and a part of me hoped it was an easily treatable brain tumor. Anything involving the brain is scary, and that seemed like the best option out of everything else.
After several more tests were taken, including an x-ray, we were finally able to speak with the neurologist about her diagnosis. He showed us the EEG and confirmed what I was fearing the most- Sadie had an extremely rare and catastrophic form of epilepsy- infantile spasms (West’s Syndrome). Her brain was a mess of high voltage chaotic patterns. Patterns which prevent progression and cause regression. Patterns that would cause irreversible brain damage. At first I felt relief in knowing that we finally had answers. Then I felt as if I’d been kicked in the stomach. The neurologist was very blunt with us and did not sugarcoat her diagnosis. I felt as if I was losing my beautiful, perfect baby girl. What did this mean for her? I never pictured her not having a life like her sister. I never imagined raising a kid with special needs. It was so much to take in. I kept probing the doctor, trying to get him to say that our case was different. Sadie would beat the odds and be okay. He didn’t. He couldn’t.
With infantile spasms, you treat it very aggressively. Each day having spasms is a day lost. We chose the medication Vigabatrin (Sabril) because Sadie was also having partial seizures before her spasm episodes and this type of medication would treat both the seizures and the spasms. We were warned that this medication could cause irreversible vision damage, but that seemed like a better option than irreversible brain damage. Sadie didn’t respond right away to the medication, and it was very discouraging. She would start the day off well, then have several episodes in the afternoon. Some days she would have long episodes (the longest being 16 minutes long) and some days her episodes would only last 2-3 minutes. It seemed that we would take two steps forward, then one step back. We were finally discharged six days after she was admitted, and she still wasn’t responding to the medication like we wanted her to. But everything that was being done for her at the hospital we could do for her at home. We were still slowly increasing her dose every three days, so we were hopeful that we just hadn’t reached her therapeutic dose yet.
Now we have been home for 4 days, and Sadie is doing much better. We have finally seen a huge improvement and she seems to be responding to the Sabril. We are also extremely hopeful that Sadie will be okay once we maintain full control of these little seizures. We haven’t seen any regression in her development (a really good sign) and she is continuing to meet her milestones. She actually rolled over this weekend! That’s a milestone she really isn’t expected to hit until another month from now. She’s her same sweet self, fully engaged when we talk to her and gives us nonstop gummy smiles. Gosh she’s just amazing. I’ve been blown away by what a little fighter she is. I know God gave her the personality and the strength to be able to handle whatever this condition throws at her.
Looking back at everything, we’ve been able to see God’s hand in all of this. We didn’t have to worry once about Carli- Nick’s parents happened to be here when Sadie was admitted, and my mom was able to be here to take over once we knew we would be staying awhile. We are in the best place we can be for this kind of diagnosis. Scottish Rite Children’s Hospital receives babies with Infantile Spasms weekly- so I felt that she had the best care she could get. There is even a clinic in Atlanta that specifically treats and follows kids with infantile spasms- which is crazy to me because this condition is so rare. We will be making the drive up there regularly now, but I feel blessed that our drive is only an hour away to get such dedicated care. The support we’ve had since this happened has been overwhelming. So many of our great friends came up to see us, bring us groceries, clothes from home, and anything else we needed. Just having them in that little hospital room with us was helpful and made us feel less alone. Three of my good friends visited right after we received her diagnosis- having them with me helped to numb the sting a little bit. Our pastor happened to be in the room with us when Sadie had to have a Vitamin B6 test done. During this test she had Vitamin B6 injected into her veins- and it burns! She was screaming and so uncomfortable- it was pretty traumatic. Just having the extra support in the room provided a sense of peace.
We don’t know how Sadie’s story is going to be written, this is something that is fully out of our control. That’s hard as a parent- I just want everything to be okay for her. I don’t want her to ever struggle. I don’t want kids to make fun of her if she has disabilities. I know that whatever God’s plan is for her life, it’s beautiful. No matter how this impacts her, I know she’ll bring joy wherever she goes. She’ll handle any challenges life throws at her with dignity and grace. She’ll be perfect no matter what.
Life isn’t perfect, and it certainly isn’t easy. Trials like this can break us, or they can make us stronger, better people in the end. I’m at peace knowing that God’s plan always wins in the end. I’m already seeing that at work. I’m holding onto these verses that happened to be a part of my devotions the week I was in the hospital with Sadie:
For I consider that the sufferings of this present time are not worth comparing with the glory that is going to be revealed to us. -Romans 8:18
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. – 2 corinthians 4:8-9
And just as if God knew I needed the comfort when we were leaving the hospital, this came on the radio as soon as we got in the car to leave. His plan is always better. Always.
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone