Recently a topic was brought up on www.ocalamom.com that hit close to home for me. 

The topic was about a premature baby.  This baby was born at 21 weeks five days gestation.  Guidelines in the UK indicate that any baby born before 22 weeks are denied medical treatment. 

Now before Makily was born my gut reaction to this story would have been total and utter disgust.  Don’t get me wrong, even today my knee jerk reaction is just that. 

It’s when I sit down and think long and hard about it that I start to waffle in my opinion. 

While I have not had a premature child, my daughter Makily was born with Emanuel Syndrome, a genetic condition that causes many medical and devlopmental problems (to learn all about that go to my blog entry entitled “Our Story”). 

Makily had three MAJOR gastrointestinal surgeries before she was nine months old.  She’s had more medical procedures in her life then I can count.  I’ve watched her lay lifeless in an Intensive Care Unit and on a ventilator breathing FOR her more times then I would like to remember. 

We have had more then our fair share of near death experiences with her.  These are moments I would like to forget.  They are forever etched in my brain and have changed my outlook on life more then I ever imagined anything could. 

I vividly remember one of those moments particularly well. 

Makily was two years old.  She had never had a seizure before in her life.  In fact we had just had a consult with a neurologist two days before this event occured.  The doctor told us that Makily looked good and that we would do some over night testing in a few months but that we likely didn’t have anything to worry about.  We only went because children with Emanuel Syndrome like Makily are prone to seizures and brain abnormalities.  I remember leaving that appointment proud that we had avoided one of the many problems that Emanuel Syndrome plagues these children with. 

Two days after walking out of the Neurologists office I awoke at 3:00 am and Makily was fussing.  I gave her some medicine thinking her stomach may be upset.  Minutes later I laid back down and just as I was drifting back to sleep she made a noise.   It wasn’t a loud noise but one that I had not really heard her make before.  I got up and turned on the light.  Makily’s eyes no longer looked like her own.  She had a look in her eyes that I can only describe as “the death stare”.  I went to her and said her name, jostled her a few times and then picked her up.  Her entire body was limp.  I laid her on the couch and continued screaming her name in her face. She did not respond or move at all.  

My initial thought was that she was having a seizure but then I talked myself out of that quickly saying that I was only thinking seizure because we had just seen Neuro days before.   I continued trying to get a response from Makily and the longer she had the death stare the more panicked I became.  I pinched her leg in the hopes that the pain from that would snap her out of whatever this was.  She didn’t even flinch.  I ran to get the phone and when I got back the leg I had pinched was twitching.  Soon both arms and legs were twitching and Makily’s breathing was starting to become labored. 

I called 911 and quickly told them I thought my two year old was having a seizure.  While on the phone I continued screaming  in Makily’s face, trying to get some kind of response from her, something that showed me she was still in there.  The 911 call lasted the longest 13 minutes of my life….13 minutes that Makily was actively seizing. 

Once in the ambulance things moved very quickly.  They put oxygen on her, her saturations were down to 72 % (normal is 95-100).  It was tough to get the IV in her and I remember there being blood all over the ambulance floor.  We arrived in the ER and Makily was quickly encircled with medical professionals and they began asking  her medical history.  I rattled it off like a script, something I had done many times before.  They were going to intubate her and put her on a ventilator as her breathing was becoming more and more labored and the seizing still had not stopped.   I warned them that Makily’s airway is malformed and that they needed to get someone who was very experienced with difficult airways.  We had been down this road before and her airway had suffered trauma from them having to go up and down her throat in attempts to get a tube down.   The ER doctor attempted to intubate her himself anyway and he failed three times.  Each time he pulled the tube out to try again Makily would gasp and wheeze for air.  I was angry they had not listened to me to begin with.  Finally they called anestesiology and he got the tube in on the first try. 

A few hours later Makily was transferred to the PICU at Arnold Palmer’s Children’s Hospital in Orlando.  She was placed in a drug induced coma for three days.  An MRI revealed Makily DID have some brain abnormalities and they felt the seizure was likely due to that.  No one could tell us why she had never had one before then or why she had such a severe one that night either.   

Those three days were absolute torture for me.  I kept wondering if the prolonged seizure had caused some sort of brain damage.  It had gone on so long.  They gave her so much medication to stop it that first night and as soon as it would wear off Makily would seize again.   No one could say what Makily would be like once they stopped all the drugs sedating her.  She already had so many problems from Emanuel Syndrome, what would she be like when she came out of this? 

 The second day Makily had tremors intermittently all over her body.  We were told they could be from the medications she was getting or it could be more seizure activity.  I couldnt have been more worried.

Luckily when Makily was taken off the sedatives and paralytic the seizing had stopped.  She had not suffered brain damage.  She was started on seizure medication and has been on it ever since.

This was just ONE time we have gone through a heart wrenching situation. 

I say all of that to say this. 

Micro-preemies have many of the same problems Makily has been plagued with….sometimes more.  Of course there are ALWAYS those handful of kids that prove the doctors wrong and grow up totally “normal” with no long standing issues from their prematurity. 

Unfortunately that is not typically the norm. 

Most babies born before 24 weeks have heart and lung problems.  Many become blind and/or deaf from having to be on a ventilator for so long.   Some develop terrible intestinal problems that become life threatening and require large amounts of their bowels to be removed.  Most have brain bleeds which causes severe brain damage and usually cerebral palsy.    Many are never able to sit, stand, walk, talk, eat or even breathe normally.   These children go through a tremendous amount of pain, medical procedures and surgeries to keep them alive. 

Having watched my own child suffer through the surgeries, procedures and never ending therapies has been an eye opener for me.  Seeing her fight and struggle to do the simplest of things that most take for granted is one of the most difficult things I have ever done. 

I have sat many a night in the Intensive Care Unit staring at her beautiful, angelic face.   Her body hooked to wires, tubes and machines.  It is in those moments of despair that I have found myself wondering how much is too much. 

How far is too far? 

At what point do I say leave her little body alone….no more?

All these are the reasons why doctors typically will not try and resusitate a baby born so early and so small.  Too many it seems like a terribly heartless thing to do.    Most people don’t look beyond what will happen to that family and baby after it’s been resusitated.  Most people don’t know what it is like to live with a trache, a feeding tube or being bound to a wheelchair.    Most parents don’t have to hand their child over time and time again for surgery after surgery after surgery.   As a parent standing by watching your child struggle to do the simplest of things like breathe and eat is one of the hardest things I have ever had to do.  I wouldn’t wish it on my worst enemy.

Make no mistake, I love Makily more then I have ever loved anyone in my entire life.  God put her on this earth for a reason and she is surely meant to be here.  The fact of the matter is though that she has suffered and been through more in her five years then most people do in a life time.  She knows no different though.  Makily does not realize it should be easy to walk, talk and eat.  She does not know that most people don’t have tubes in their stomachs.  To her THIS IS normal.  As long as Makily is loved (and she has her Spongebob) she is happy.  She takes joy in the small things…things like the wind in her face. 

All that being said, I truly can’t say what I think is the right or wrong answer here.  I don’t know that either answer is right or wrong.   

I have learned that in life things aren’t always black and white…there are FAR more grey areas then I ever dreamed.