Our journey started simply enough…my labor was going to be induced because of hypertension.  We expected this – this was no surprise to us.  We checked into the hospital on a Friday night.  The plan was to have my labor started around 7:00 am the following morning.  Everything was going fine that night until around 4:00 am when two nurses rushed into the room and threw an oxygen mask on me.  That was the first moment of worry – what was happening?  I was told to take deep breaths while one of the nurses went to call my doctor.  Still, we did not know what was happening.  An hour or so later, I was told that my doctor would be coming to discuss a C-section with me.  Again, this wasn’t completely unexpected – we had been warned that I would probably not be able to deliver my baby without one.  We discussed the options we had at this point and it was then that I found out what was going on -- the baby’s heart rate was getting pretty high.  I remember laying there watching the number and each time it went a little higher, I remember my catching my breath.  I called my family and told them that we were headed for a C-section and that if they wanted to be there, they needed to start heading to the hospital.  Once everyone was gathered, we decided to go ahead with the C-section as soon as possible.  As soon as possible turned into a whomping 12 minutes!  Ryne Alexander Phillips was born at 8:27 a.m. on October 22, 2005. 

            After Ryne was born, we were told that the umbilical cord had been wrapped around his neck twice and the doctor said that the C-section was the best option for him.  We were lucky, he said.  Good call, he said.  Even when Ryne was admitted to the Neo-Natal Intensive Care Unit because he could not maintain his blood sugar, we still thought we were lucky and that we had escaped a huge disaster.  Later, my husband would tell me they had to work on Ryne right after he was born – they had to suck out his lungs because he had fluid in them.  But still, we were lucky – our son was perfect. 

            We took our baby home and life began as a family of three.  Things were going well.  Ryne was a good baby.  It wasn’t until Ryne was about two months old that there were some “oddities” noticed….Ryne only used his left hand, Ryne only looked to the left, Ryne would never make eye contact.  We defended our son, because after all, he was perfect.  Finally, after a lot of nagging by family members, we agreed to have Ryne “checked out.”  We were still convinced that our boy was perfect and we were just humoring those that were worried about him.  At a checkup, we discussed the concerns with the pediatrician.  He assured me that he thought Ryne was fine, but just in case he wanted a CT-scan of Ryne’s brain.

            The day of Ryne’s CT-scan arrived and I took him for the procedure.  I helped hold my baby down for the test to be done and I remember one of the technicians asking, “Are you supposed to wait until we notify your doctor?”  Nope, just let him know and he’ll contact me and off we went.  I was still thinking all was good with him and that this was just an attempt to satisfy Ryne’s worried Grandparents.  That was March 15, 2006. 

            As fate would have it, March 16, 2006, was one year to the day I found out I was pregnant with Ryne.  However, that March day would not be as happy as the year before.  As soon as I got home from work, the phone rang – it was Ryne’s doctor.  He has such a distinctive voice; I didn’t need for him to tell me who he was.  I knew…and I knew that the news must be bad.  I braced myself, but I was never prepared to hear the words that came out of his mouth next.  “Amy, it appears that at some point, Ryne had a stroke.”  He proceeded to apologize to me and he told me that he wasn’t sure what exactly was ahead of us, but he would find a great neurologist for us.  He said that with therapy, Ryne should be just fine.  After the initial sentence, the words just blurred together.  I don’t remember much after those first words.  As we hung up, he told me that he would find out what neurologist would be best for our son and he would call me the next day. 

            Words cannot tell you how terribly we felt.  We were Ryne’s parents – we are supposed to protect him and notice when things aren’t right.  We shrugged off the concerns of others because we felt that there was nothing wrong with Ryne.  Obviously, looking back on things now, we are so grateful to those people who voiced their concerns and even more thankful they “pushed the issue” and made us have our son checked out.

            When Ryne was examined by his Neurologist for the first time, she ordered a series of tests – EEG, EKG, Echocardiogram, numerous blood tests, and so on.  All of these tests were done to find out possibly why Ryne had his stroke.  Truth is, we don’t know for sure…this is what we know could have caused Ryne’s stroke:

1. The umbilical cord being wrapped around his neck twice – that could have cut off oxygen to his brain resulting in the stroke.
2. Ryne has a hole in his heart – it’s possible that hole formed a clot and traveled to his brain resulting in the stroke. 
3. Ryne’s blood tested positive for some clotting agents – but this is doubtful because the agents Ryne tested positive for were controversial for causing infant strokes. 
4. Ryne’s iron was very low – that could have played a roll.

For us, the most logical explanation is the cord.  It’s the most definitive. 

            Since that initial visit, we haven’t worried much about “why” any more.  Our focus has turned to treating what’s left over.  During that first visit, we learned so much….babies as young as Ryne should not show a preference for one hand over the other.  We also learned that the reason Ryne was staring to one side was probably the result of seizures.  We learned that our son might require Botox injections one day if his muscles get too tight.  We learned A LOT. 

The Neurologist wanted to put Ryne on an anti-seizure medication and she told us she was hopeful that we’d start seeing “the real Ryne.”  She was right…after a few weeks on the medicine, our son laughed and smiled for the first time.  The difference we saw was incredible.  It was like Ryne was waking up for the first time.  While the anti-seizure medication seemed to be helping, the Neurologist warned us about a more severe form of seizures she was afraid Ryne would start having.  Those more severe seizures were called “Infantile Spasms.” 
Ryne did start spasms around Labor Day of 2006 and he had to put on these injections to stop them.  The medicine was unbelievably expensive and on top of the cost, my husband had to quit working because Ryne would not be allowed in daycare while taking these shots (due to a compromised immune system).  These injections made my son gain about 5 lbs (a lot when you consider that’s 25% of his starting weight), he became incredibly grouchy, and he lost his ability to do some tasks.  It was tough – but at the end of it, we are so glad we did that.  As soon as we started the shots, the spasms were gone within 3 days. 

Since then, we’ve continued on with Phenobarbital and we are proud to say that we have not noticed any seizure-like activity since his last spasm episode in October 2006.  Ryne’s coming along quite well.  He currently gets Physical Therapy twice a week, Occupational Therapy twice a week, and Speech Therapy once a week.  Ryne does wear a splint on his right hand to help hold it open.  He also has a small splint for his right foot to help him learn to stand properly. 

All things considered Ryne is doing really, really well.  Most people who meet him don’t realize there is anything “wrong” with him unless they see his splint and then they’ll ask if he hurt his hand.  Most are shocked to learn that our baby had a stroke.  “Don’t strokes just happen to old people,” they’ll ask.  No, strokes just don’t happen to older people – our son is living proof of that.