Samantha was born on July 18, 2006 to her proud and anxious parents, Bart and Heather. Perfection was never so adorable! Sam was 36 weeks and didn't suck or latch on right away. No problem, we thought, she's early....she'll catch on. Except for that 'little' issue, we took her home after a week (c-section), coo'd and tickled the baby and lived life as new parents.
At two months, eating was still an issue. She was gaining weight but not great. We didn't see any smiles and eye contact was spotty.
"We'll, she's early." we said and the doctor confirmed.
"Let's give her some time to catch up." He said.
"Whew!" We thought. "She's just fine, just needs to catch up."
Samantha rolled over at 4 months but still no smiles or laughs. She started refluxing pretty badly and losing weight. We increased the calories in her formula, kept her upright after eating and kept hoping for the best.
2006 holidays were tough; still no smiles or giggles. Sam's head control was poor and she didn't respond to sound or make eye contact. We all waited for Samantha to catch up but she was falling further behind. Relatives were starting to whisper...deep down inside I knew something wasn't right.
January 2007; Samantha got really sick while we were up skiing for the weekend. Nothing we could pin down exactly, she just wasn't 'right'. She ran a temperature, her eyes were buggy, and she kept making this horrible screeching sound. Looking back, we think she was seizing but hindsight is 20/20, eh? A frazzled, nerve-wracking drive down the mountain ended us at Children's hospital in Denver. Thank goodness!
Samantha stayed in the hospital for 10 days. She had MANY different tests and blood samples have been sent to more places I've visited. Sam got better day by day and no one could explain why she got so sick.
"Oh yes," they said. "Something's going on, but we don't know what."
February 6th, we took our daughter home. I was a little leary. She had been in hospital for 10 days. After numerous tests, they put tubes in her ears. That was it. We hadn't found a solution to any problem. We were going home with a ticking time bomb.
Our little 'bomb' went off on February 19th at 2:00 in the morning. Samantha was screeching in the night. When I checked on her, she was blue, struggling to breathe and her eyes were fixed in the back of her head. We called 911 and she was air-lifted to Children's.
15 days in the hospital. The doctors did surgery for a g-tube to help her eat. She was put on continuous oxygen because she stopped breathing at night. We discovered she had a hole in heart (not AS serious as it sounds) and her EEG did look a little suspect. She could be having mild seizures. Samantha was sent home. This time we had a nurse and a respiratory therapist waiting for us at the door....ok, I felt a little better.
Samantha went home on Wednesday. On Friday she was airlifted back to Denver because of seizures. She stabilized and we were sent home that night. On Monday she started seizing again and we were right back at Children's.
This time we all insisted on some sort of an answer. Samantha was hooked up to an EEG for a week. Fortunately, it was at this time, under the care of the doctors, that her seizures really presented themselves. Samantha was seizing 90% of the day.
On Thursday a different type of seizure emerged called Infantile Spasms. These are bad. Infantile Spasms (also known as West Syndrome) is a constant energy disruption of the brain. Spasms emerge between birth and 6 months and are usually gone by two. Unfortunately, these are the years that babies develop the most. If the brain is constantly spasming, the brain is not developing. Fortunately, we were in the hospital with a great Neuro. She diagnosed Samantha, prescribed Vigabatrin and we were sent home.
A month later, the Spasms were gone. YAY! Whew! Samantha continues to have complex partial seizures which we are trying to control. We put her on the ketogenic diet in August which seems to have slow success. Developmentally, Samantha is very hypotonic (low muscle tone) and we are still working on head control and sitting up. Eye contact is much better and we can even cox a smile every once in a while. We are now trying to wean her off some of the seizure drugs. She is on a 'cocktail' of Vigabatrin, Keppra and Topamax.
Samantha continued to fight her fight for three more years. On July 25, 2010, one week after her fourth birthday, we lost her to a massive seizure. Our blog is now about healing, hoping and supporting others with Mitochondrial disease.
I posted something cryptic on Facebook Saturday. It caught a lot of attention from my tribe but it really wasn’t a big deal…. nothing ...
What a great way to end our week. Thank you Angela! A Little Light There have been so many topics I have considered writing about d...
A mitochondrial diagnosis is dark. And lonely. Here is where your donation will go to provide some hope and light. Every 15 minutes...
Nothing like an international crisis to get me writing again. I've been in a terrible mood. I should probably unplug, stop engaging wi...