It was the moment she stopped breathing.
Having lost her triplet brother earlier in the year, there’s no question this was the last straw that triggered my PTSD (Post-Traumatic Stress Disorder). It wasn’t the bed rest, the 27-week preterm delivery, the loss of Carter at 49 days, or the 111 total days we spent in the NICU waiting to bring Braden and Tenley home. It was this. It was the moment she stopped breathing on a seemingly normal day at home.
I was alone, finishing up a pumping session before we headed out for their 9-month check-up. Normally, I would put them in the swings while I did this, but something told me that day to put her on the couch next to me. She cooed. I pumped. She played with her hands. I pumped. I looked away for a second to check on her brother, still in his swing, and when I looked back, she didn’t seem right. She was almost dazed, staring off into space. I said her name; she still stared. And then… then she turned blue.
My instincts kicked in, and I knew what to do. I picked her up, put her on the changing table and tried to jostle her lightly to break her out of it, and when I stared at her and flashed back to seeing her brother taking his last breaths, I knew it was time to call 911. As I put her on the floor ready to do CPR and had the 9 and 1 dialed, she started to cry. Then so did I.
Tenley after her first seizure.
I called my husband and he met me at the doctor. Since we already had the appointment, which was a five minute drive, and since she was again breathing, we decided to take her in. His office was in a hospital, and we called ahead to prep them for her arrival. When we arrived, I met with the doctor and my husband got on the phone with her neurologist. Tenley has a VP shunt for hydrocephalus due to IVH (intraventricular hemorrhage), and anything out of the ordinary meant an immediate call.
They told us that we needed to head to see them and also gave us news I never expected. They suspected a seizure.
Wait… didn’t a seizure mean convulsions and foaming at the mouth? She stopped breathing!
The diagnosis
In the next week, I would learn about the different types of seizures and what that would mean for Tenley in the coming years. I’m embarrassed to admit it, but the first thing I thought was, “Oh, no! She won’t be able to drive!”
One of many EEGs during her hospital stay to diagnose the seizures.
Tenley spent a week in the hospital as doctors performed test after test. She continued to have seizures and they progressively got worse. The convulsions and foaming at the mouth, it happened. They told us that her seizures could be caused by numerous things: her prematurity, her shunt, the tumble off the couch she had that showed a new hematoma had developed, the contaminant meningitis she contracted in the hospital, or just that she was prone to them without explanation.
They started her on a simple seizure medication and sent her home, telling us that she could have more and that hers were the kind that started out as staring spells, vomiting spells, and very reduced breathing. I demanded an apnea machine to monitor her breathing in case she had one in the middle of the night, and while they said it wasn’t possible for her to die from these as the body would “catch” itself, I was having none of it. We left with instructions to follow-up in six months or if she had another seizure.
When seizures turn into Epilepsy
Waiting for answers
Everything was going well, and the medicine seemed to be helping. Until she had another one. At least this time, my husband was home and could see the episode (this helped me feel less crazy, as if it were proof I hadn’t been making them up). Back to the hospital we went and onto a specialist. Because she had a second one, we were now in Epilepsy territory.
Epilepsy is diagnosed when a person has repeat seizures, whether the reason is known or not. For Tenley, because her seizures progressively got worse (leading to convulsions, stiffness, etc.), she was diagnosed with complex partial seizures evolving to generalized seizures. We learned that this meant a two-year treatment protocol. She was started on a new medicine that we were told she’d have to be on for two years without seizures before she could be removed from it. Two-thirds of patients successfully stop their seizures with medicine. She, fortunately, was one of those. But we also learned that 50% of patients that wean off of the medicine end up back on it for life. Because she had a shunt and already had a history of “brain issues,” her likelihood was 90%.
Moving forward
Tenley now – 2 years post-seizure
We’ve followed up with her neurologist since then, and we’ve just passed the two-year mark. If I were completely honest, I’d tell you I was nervous. I’m not ready for her to come off the meds – I’m not ready for this test. We’ve just gotten to the point where we’ve surpassed her prematurity being the bulk of what defines her. We’re in pre-school. We’re – dare I say – almost normal …
I’m not sure where we’ll go next, but I’m thankful for the research and doctors that care for epileptic patients. And whether she has this on her shoulders for life or not, she’s a fighter. She’s proved that already.
For more information on seizures, epilepsy, treatment, and more, visit one of the links below: