Simply put I am heartbroken. I’ve suffered a loss and I’m not sure I’ll ever gain it back. In May of 2012 my heart was stopped, shredded, gutted, revived and restored for daily function. I’m not and will never be the same since that day…
On November 5th, 2010 I gave birth to a healthy, thriving, full term baby girl. 9lbs 21 inches of perfect. Our hearts were full and we soaked in her beauty daily. The months passed and she was developing normally. She crawled at the “right” month, she cruised “appropriately”, walked, talked and engaged appropriately cognitively. She never so much as had a cold and had breast milk for 16 months. One day when she was 18 months JJ and I compared stories of how we had seen her do something “strange.” We had both seen these episodes of her staring off and jerking. We were very concerned and rushed her to the nearest hospital. We live two minutes from the first hospital we visited. There we were told that they couldn’t do anything for us because they didn’t have the right “care for her.” Our pediatrician told us to travel to Northridge hospital. We traveled there and she was sedated given an MRI and EEG. At the time we didn’t know this entire visit would be a waste and that we would need to eventually repeat ALL of this. The results were reviewed by a local doctor who new she had epilepsy but was not sure what kind as he “hadn’t seen” this type of seizure before so again we traveled to another hospital to seek help. My brother in law’s girlfriend recommended we travel next to CHLA. It’s supposed to be the best hospital for children and I am sure they do great things but they really dropped the ball with my kiddo. We waited for hours to get into the emergency room. Finally we saw a doctor. Again this doctor had no idea what he was seeing and needed to consult the head doctor on call. We had video recordings of these “episodes” and we were able to show all the doctors who visited us these as well as see our kiddo in person. In followed several doctors who “reviewed” her video and her. What followed next has stuck with me for two years now and I quote “those little things? maybe because you are young parents you are unfamiliar with TODDLER behaviors.” J and I left the hospital thinking to ourselves that this couldn’t be. In my heart I wanted to say oh thank heavens she’s fine and these doctors know far more than we do! But, doubt played in our heads over that day and the following as we watched these “episodes” multiply in length and frequency. We were very concerned. JJ had been in contact with a man who’s son had been treated at UCLA. He encouraged us to reach out to his doctor, Jason Lerner. We quickly emailed doctor Lerner a video of the episodes and he immediately set up and appointment for the following week (CHLA put us on a wait list to see their nuerologist who just for reference called us for our appointment exactly 6 months after we called). We arrived in Dr. Lerner’s office hopeful and scared. We brought our sweet little girl in and immediately within minutes Dr. Lerner told us we had to check her into the hospital quickly. Head spinning, I was walked over to Mattel from their office and I was told to check her in. JJ had gone to move the car and get a bag I had packed “just incase.” They did a full work up on her (repeat MRI, VEEG, blood work), we saw 10-15 doctors, first the ped rounds, then neurologists, various nurses… Our families rushed to the hospital and we all sat in a room as Dr. Lerner, Dr. Kornbloom and Dr. Shrey entered our room. This moment is one I will never forget. Everyone in the room sobbed and shook as the doctors delivered the results that our precious girl had Infantile Spasms. A very rare form of epilepsy that is life threatening and deemed catastrophic. They went on to tell us that she had roughly a 50% chance of surviving the following week and weeks to come and that the immediate stopping of the spasms was vital not only to her brain and development but her ability to live. I immediately was in disbelief, I could hear the head neurologist for the hospital say “you don’t look so good, would you like to sit down?” I know I could hear him but I didn’t respond, I rubbed my head over and over again and I said to myself what? How is this possible? How could my perfectly normal, healthy child be dying? They must be wrong. Maybe the test results got mixed up? Isn’t that a possibility? Following lots of tears in the room we were in (I did not cry, something I’ll pay for later and tell you about) we immediately jumped into survival mode. Okay, what’s next? A round of heavy duty steroids, a spinal tap, a longer hospital stay, PET scans, surgeries, medication nightmares and a wealth of unfathomable worry.
18 months before hospital-
During steroid treatment-
The following weeks were beyond difficult for our family. Ultimately, within two weeks of diagnosis we were able to get her seizures controlled and she was able to leave the hospital. We were told to wean off the steroids and go on topamax a long term maintenance med. We had 6 months of seizure freedom before they returned again with a vengeance. Right after her second birthday and just before Christmas we saw a spasm. At first we tried to deny it. But, after a few there was no mistaking the nightmare had returned. We found out that she had significantly outgrew her maintenance med and the doctors excuse was that they wanted her on the lowest dose possible. Needless to say the battle we were about to face would be worse than the last one. During this time my husband lost his job because he wanted to be by our daughter’s side. My job was more stable and they were very supportive of me (well most people were) in taking the time to be with my daughter. We immediately, tried prednisone again and it did not work. We then went onto vigabitrin pills, which was incredibly difficult. She had an awful gag reflex and as you can imagine these meds do not taste good so we had to do pill form. Pills worked fine for the tiny topamax pills but the vigabitrin would prove to be undoable in the horse pill format. We sat helplessly watching our daughter seize. When you have a seizure your brain can be functioning in a normal pattern but when you have infantile spasms each spasm is causing brain damage, often irreversible.
round two steroids… the best part is having people stare at you like why are you overfeeding your “fat” child. It’s heartbreaking to say the least. Thank God for supportive friends and a very tough sister.
After round two of steroids, trying vigabitrin and feeling like this would never end we went to meet with a neurosurgeon because we were told that our daughter might be a good surgical candidate. During this meeting we were told that a resection was not possible and that her “only” hope at life would be to have a full hemispherectomy. We were told that she “didn’t know she was a human, she didn’t know she was in the room right now, and didn’t know I was her mum.” Additionally, when we were looking doubtful as a yes to the surgery we were told that we had to consider a life under these “standards” and what is “living, if we don’t really know we are alive.” At that point I officially stopped listening to this horrible man. I say horrible because he couldn’t possibly have a heart himself. If he did, he would know that each word was cutting into mine, each statement was crushing my hope and dreams for my child’s full recovery. I stood up and left. My husband sat and listened to the rest of his appointment but I simply couldn’t. It was at this point I think I suffered my first reaction to the ptsd I would later be diagnosed with due to our experience, a full blown panic attack that manifested itself as a migraine and inability to catch my breath. Needless to say, we were not willing to cut out half of our daughter’s brain, we didn’t want her to have a claw for a hand and to have to wear a permanent brace on an ankle. Her biggest outlet and joy in life is her ability to be physically active and when asked the question would I rather NEVER hear my child talk or have her not be able to swim, run and dance… My answer was yes, I would rather not hear her talk than lose the sheer joy and happiness I see in her when she’s actively swimming, climbing, dancing, running through the wind in her own imagination.
After this awful appointment we continued to research ways to help our daughter. We came across the ketogenic diet and tried that for a few months. It was a very expensive and intense diet, no processed foods, everything had to be precisely calculated, and weighed to the exact milligram. Challenging and stressful to say the least. Also, extremely difficult for a three year old. How does one explain that you can’t eat ANYONE else’s food except what I’ve made.
Next we found sabril. It’s the same medication as vigabitrin which we tried before and is in a powder form. We were told it had to be mixed in water and then shot in her mouth via a 10ml dose in a syringe. We, knowing our kiddo, thought this would absolutely not work. What if, just what if, we mixed it in juice? Would that lessen the effect? Would the med not work the same? Would there be any harm in trying? The answer we came across was NO! Yes, Sabril can cause PERMANENT vision damage but in our eyes we weighed permanent brain damage with peripheral vision loss (less than 10% of the time) and we simply decided we owed it to her to try. We did, and thank goodness we did. The sippy cup med distribution has been the source of many headaches but thankfully with support from friends and family we have mastered it.
Until today I haven’t publicly shared that our daughter has been seizure free since June 19th of 2013. Since then she has 122 words, swims without aide, runs, climbs, hops, jumps, rides a bike, matches, builds towers of 8, completes lacing activities, peg activities and basic three/four piece puzzles. She is significantly behind her peers but I think we all know what a miracle she is, what a tremendously strong child she is and how much she can be capable of. We were told NEVER to google Infantile Spasms. Naturally, I listened… Well I at least tried to. I listened the first time around but the second time I couldn’t, I had to “know” what lay ahead for my child. Praise God, I am finding out that there are exceptions and my sweet daughter tries every day of her life to be one of those exceptions.
I plan to write this blog to share with you my true feelings behind raising a child with significant delays and documenting the courage it takes to have another child after these trials and during. Please know that it was very difficult for me to finally sit and write this and it is a condensed, shortened version of the last two years but it gives you some insight into why I am the way I am…