Infant health scare nightmare
They say, “Being a mother is learning about strengths you didn’t know you had and dealing with fears you didn’t know existed.” In the first few months of being a mom, I wasn’t anxious or hovering. I tried not to let the worries of SIDS and illnesses cross my mind. It wasn’t until around 14 weeks after Violet was born, when I was nearing the end of my maternity leave, that I started getting crippling anxiety. I knew Violet was going to be in great hands with my stepmom each day, but she was becoming more irritable than usual in the last few weeks and I didn’t know if someone else was going to be able to handle it. I would leave my house at 11 AM and walk with her in the stroller for hours and it would help. She wasn’t spitting up, but she looked very uncomfortable and suffered from painful gas. I was due back at work on May 30th and was trying my best to figure out what was going on. On May 22nd Violet was screaming in the middle of the night so I took her downstairs and paced the floors. She wouldn’t stop crying so I stood on my front stoop with her at 1 AM getting fresh air and it distracted her enough to calm down. I rocked her to sleep on the couch and woke up a few hours later to watch her as she slept wondering what could be bothering her so much. A half-hour later while she was still sleeping, she started making spastic movements for 2 minutes. I grabbed my phone and started recording it to show my husband, Brian. I had no idea what was going on and how to help her. I called the pediatrician and scheduled an emergency appointment. I showed the video to the doctor (her usual doctor was off, so we saw a different doctor in the practice). I also mentioned that recently she held her breath two times which I read was not normal for her age. He seemed concerned and started rattling off a list of things I needed to look out for because this could be early signs of Infantile Spasms which are seizures in infants. This was my biggest fear because when I googled the movements the first search result was Infantile Spasms and what a horrible disease it is for a child. The doctor mentioned this could be Sandifer Syndrome, abnormal movements in infants to relieve the discomfort of acid reflux. Violet did not have acid reflux and had never spit up, but the doctor prescribed her Ranitidine to see if it relieved the discomfort and in turn would stop the movements. I left the doctor’s office more confused and concerned than when I arrived. I was hoping for some magic explanation and was told I was neurotic. Our pediatrician reached out to us once she saw that we were in for an emergency visit and decided to send us to a cardiologist because Violet had a heart murmur at birth, and she wanted to rule out any heart-related disorders. The cardiologist said Violet grew out of the murmur and he thought the movements on the video appeared to be Sandifer Syndrome but recommended seeing a neurologist.
The reflux meds weren’t relieving discomfort after a week and Violet was having more “episodes.” I decided to get a referral for a Neurologist. Since the first episode, I joined a Sandifer Syndrome group on Facebook to read about the experiences of other parents and see if it was like what was going on with Violet. A lot of the videos were extreme cases, but then there were also scenarios of misdiagnosis and parents that waited too long for video EEG when their child in fact had Infantile Spasms. All of this made me worried that we were missing something and not being proactive enough. I was able to get into a Neurologist on May 30th and pushed back my return to work. Brian was on probation at his new job, so he had to use his emergency days off sparingly, so he wasn’t able to come with me for the consultation. My friend Alyssa came with me which was a huge relief because I was so afraid of the news we might receive and to top it off Violet was the most irritable she had been at the office. Brian was able to meet us there on his way home thankfully because the doctor referred us to be admitted to Staten Island University Hospital for 24-hour EEG monitoring to rule out Infantile Spasms. Violet being so irritable didn’t help because the doctor said something could be going on in her brain causing her behavior. While I wanted to rule out seizures, I did not want a specialist to be concerned enough to send us to be admitted that same day. I couldn’t wrap my head around all of this. I wanted to advocate, push for answers and trust my gut, but I was more confused than ever. We went home to pack our bags and headed for the hospital. There was no technician to begin the monitoring when we arrived at night so they admitted us and told us the testing would begin first thing in the morning. We decided Brian should go to work the next day (Friday) because we wouldn’t be getting results until Saturday.
I met with the Pediatric Unit’s Neurologist, Dr. Okolo, who was very knowledgeable and sat with me explaining everything that was going to happen and the possible outcomes. The thing we had in our favor was that Violet had been reaching milestones on time and she was not regressing. When she saw the videos, she said it was very similar to seizures and we did the right thing seeing a neurologist. She was honest with me that she had seen cases of seemingly healthy children like Violet diagnosed, but if it were Infantile Spasms, we would most likely be catching it very early on which is better for treatment. I wanted to stay positive, but I was crumbling. Seeing all the sick children in the Pediatric Unit was devastating. I am a Wish Granting volunteer with the Make-A-Wish Foundation and have been around children with life-threatening conditions for a decade. I go into homes and meet families that are up against extraordinary odds and admire their strength and positive outlook. I never imagined being on the other side as a parent and it was the scariest experience of my life.
Dr. Okolo told me that Violet’s testing was going to begin shortly and I’m thankful for my sister taking off from work to stay with me. She helped me try to calm Violet while she got the electrodes placed on her head. We played Celine Dion’s Power of Love which was Violet’s favorite song that usually instantly soothed her. Violet’s screams could be heard down the hall. It was killing me that she was going through all of this. Once we got back to our room my dad and stepmom were there and gave Violet lots of love and snuggles. It felt like the longest day ever and we weren’t getting results until 12 PM the next day. I had to press a button every time Violet was having a spasm which flags the scan. After 4 hours Dr. Okolo called to tell me that so far, they didn’t see any concerns. My fear was that it would be the one night where she wouldn’t display the behavior and this was all for nothing, but overnight Violet had many spasms, and I was pressing the button every few minutes for a two-hour window. Now that I knew the spasms were documented it was a scary reality that she could be diagnosed with something. In the morning, the doctors met with us and gave us the best news that Violet did not have infantile spasms and the movements were most likely attributed to Sandifer Syndrome. We were discharged Saturday afternoon from the hospital and were told to follow up with our pediatrician the next week to discuss the course of action for severe silent reflux. I had to return to work that Monday and it was so hard to leave Violet when she was still having these episodes and irritable. Thankfully, she had a smooth transition staying with my stepmom during the day and after two more weeks of medication, she began to feel better. We went through months of irritability and discomfort chucking it up to colic and I wish we were able to help her sooner.
All I can say is as a parent always keep pushing if you know something is wrong. People will tell you not to Google and drive yourself crazy, but there is a difference if your intuition is telling you otherwise. I think it is very important to choose healthcare providers that you feel listen to you and provide the care you expect. I am blessed to have a pediatrician, Dr. Zacchilli, whom I adore, and she encourages me to text her! Even when Violet was days old and I was struggling to nurse she gave me guidance and encouragement and did the weighted feed to reassure me. Year one was a huge challenge for me, and Dr. Z was so valuable in my corner.
Each day I write three things I am grateful for and I almost always write that I am grateful that we are healthy. Especially during the pandemic, I know that health is not guaranteed and is something we shouldn’t take for granted. I highly recommend practicing a moment of gratitude each day to see what is there instead of what isn’t.
