When bad things happen - two part article

One of my co-authors, Julie Mott, wrote an article a bit back called Holland.  I have first hand experience with what she wrote about, just not in the exact same way.  Let me tell you the story about what happened in my family.


I was told early on in my second pregnancy that I was going to have twins.  My ex-husband was really excited about it because he’s a twin and so is his Mother.  The pregnancy was grueling to me.  
At a certain point my hips just stayed out of place which was really painful.  I had a hard time breathing because one of the twins was so far up inside me he pushed on my lungs.  Constant nausea.  However, I passed all of these things off as minor and usual in a twin pregnancy.  As one of my OBGYN’s told me, “Your body isn’t made to carry more than one child at a time, so of course its going to react badly when there are two or more inside of you.”  He was right!  The birth was cesarean by choice, since I’d had one with my first child.  Two boys were born to me at 8:01 and 8:03pm on Wednesday October 7, 1998.  They both had to be treated with oxygen for the first twenty-four hours, they were five and a half weeks early.  Nick became jaundice, and later in the week so did David.  Other than that their births went well and everything seemed fine.  


As a parent, you watch for those milestones as your children grow.  Both boys hit their milestones on time, a few weeks apart, Nick always racing in first.  When it came time to crawl, Nick started one day and was off and speeding on all fours the next.  David however, decided to be difficult and learn to crawl upside down!  He used his head and legs to move around, which seemed strange but it worked for him.  A few weeks down the line he was crawling just like any other baby.  When it came time to walk, about a year old, one day Nick decided to run over to me.  Although he fell twice on his way, he got right back up and kept going.  David still needed help and learned to count on his older brother Jake to hold his hand and help him around.  It was at this time that we really began to notice that there was something wrong.  When David would walk, it looked as though his hip was out of place, it looked painful.  When he turned fifteen months old he finally let go of his brothers hand and began to walk without assistance.  Now we could really see a problem.  He limped.  I talked to his pediatrician about it and she sent us to an orthopedic surgeon.  This is when I thought I was going to go crazy!


This doctor examined David.  Once he was finished he told me that he was fine and told me that I was a bad mother for comparing my children and their milestones.  That each child learns on a different level and that he couldn’t believe what a rotten parent I was.  I went home and cried.  I let him make me question myself and my parenting skills.  I tried my best not to compare them, not to “notice” anything wrong, but after two more months I was finally convinced that it was the doctor who was crazy and not me!  I went back to my pediatrician and demanded that she send me to a new doctor, one that specialized in pediatric care.  She had no problem doing so and within a few weeks we were up at Nationwide Childrens Hospital for our first visit.


Let me say now, how dedicated, nice and helpful the doctors and staff of Childrens were and are.  They examined David and within a few minutes we were told that he had a length discrepancy in his legs.  They took x-rays to make sure and sure enough he had a difference in length of three-quarters of an inch.  This is why his hip looked so funky when he walked.  They gave us a prescription for a prosthetic for the bottom of his shoe so that his legs would be the same length when he had shoes on.  I felt relief for the first time in a long time… not only was there something wrong and it wasn’t all in my head, but now we were working towards getting it fixed!  


Two weeks or so later, one of our pediatricians called.  This was the husband of our normal pediatrician (they had a practice together but we rarely saw him).  He said that he and his wife had discussed David and had now decided that they should refer him to a neurosurgeon.  That scared the crap right out of me.  He told me that the reason that they wanted him to go to this doctor was that they needed to know what caused the discrepancy in Davids leg length.  He set up the appointment with a neurosurgeon at Children’s named Edward Kosnic, head of pediatric neurosurgery.  We were sent for two MRI’s, the first was for his back and neck and the results were sent to the Ortho doctor.  The second was of his brain, results going to Dr. Kosnic.  Let me say that these two MRI’s were the HARDEST thing I went through as a Mother.  Since David was only twenty-two months old for the first one and twenty-four months old for the second one he had to be sedated for both of them.  IV sedation on a child of that age… WOW… very hard.  It took a few nurses and my Mom and I to hold him down, I’m not sure who cried harder, David or me and my Mom!  Seeing your child literally screaming… red in the face, tears dripping on his cheeks it made my heart hurt.  However, it was all worth it in the end.  We met with Dr. Kosnic after the MRI and he showed us David’s brain.  He said that David had two holes in his brain… my heart sunk into my stomach.  He told us that he didn’t see it as a problem at the time.  Although David met his milestones a few weeks late, he still met them.  One part that was missing was extremely small and in his learning center.  The other part was a bit larger, it literally looked like a piece of pie missing.  This part controlled the growth of muscle and bone in David’s left side, he has what is called muscle and bone atrophy.  He wanted David in for a CT-scan or MRI every six months to a year to make sure nothing changed in David’s brain… that would be when we needed to become worried.


I think to this day Dr. Ed Kosnic is my favorite of all of the doctors that David has seen, and this is why.  As we left his office he told us that if we ever had any questions at all to feel free to call him.  We did and he never pushed us off on some student, he always called himself.  When we asked him what caused this to happen to David, he said things happen in the womb that are unexplainable, there is no way to tell why or how it happened.  He asked permission to go over my medical files from the pregnancy and later asked if he could write a paper on David.  The minute we left his office he personally called our pediatrician and explained everything to them about David.  Later that same afternoon he wrote the pediatrician, by hand, not computer and asked her to partner up with him to “help this little boy however we can by working together.”  Since then he has done nothing but try to help David get any help he needs in any way he can.




Part two soon to follow…


Part two is here