A Love Story

This all began 2 months ago.  Not true.  This really all began 9 months ago.  I found out I was pregnant again.  I was terrified.  You see, when my husband, Sean, had begun brining up the topic of trying for another baby a few months before I balked quite a few times.  I had never really been able to wrap my head around the idea of being able to love another child as much as you loved your first.  This is ironic considering I am 1 of 6 children; the second in the birth order.  The psychology major in me has to wonder where that belief started for me, but I digress.  The thing is, I was absolutely head over heels in love with our little girl, Kennedy Egan, almost 2 at the time.  I honest to God could not fathom ever being able to love another child the way I loved her.  Anyone I sheepishly divulged this to would tell me I was crazy that your heart just makes room; somehow you are capable of loving them all the same.  So to learn I was pregnant (almost 2 months ahead of when I had planned-yes, I’m that person that actually thinks I can plan such things) I was thrown for a loop. 

Things were certainly different the second time around.  A toddler does not care that you are exhausted and nauseous.  Your moodiness is not as cute to your husband as it was the first go.  And time.  Time just barrels through.  We were at the 13-week appointment before we knew it, the whole first trimester done with.  As we did when I was pregnant with Kennedy, we opted to have the nuchal translucency testing done.  Not because we had any reason for concern, but because I relished the idea of taking an extra peek at the baby.  The ultrasound looked good and I went for the blood work, never giving the whole process even a second thought when I left the lab. 

I was at work the following week when I got the first call from the OB office.  The first round of blood work showed an elevated risk of Trisomy 21, or Down syndrome.  Don’t panic they said, the likelihood of the baby actually having it is so small they said.  Still, I cried.  I cried like a wounded animal.  Instantly, I felt my world turning upside down.  Sean, ever the optimist, was reserving any response for conclusive results.  So, we moved forward with another genetic test, one with 99.9% accuracy.  The upside (aka what was keeping me from losing my mind), we would learn the baby’s gender ahead of the 18-20 week time frame you would usually be able to find out.  In my mind, and then right out loud, I said what you’re not supposed to say.  I said I hoped it was a girl.  I felt like since healthy was already off the table I might as well be honest.  I hoped it was a girl because at least we still had Kennedy so even this baby never was able to do any of the things I’d always dreamed of doing with my daughters: shopping, manicures, ganging up on Daddy, shopping for a prom dress, wedding dress, clothes and nursery furniture for her own babies- I still had my mini-me to live out those dreams with.  But if it was a boy, I feared Sean was going to suffer this immense loss of the son he had expected to have and never would.  More than anything, girl or boy, I was terrified about what this would do to my baby girl.  What kind of life would this leave for Kennedy?  I felt like we’d betrayed her.

We waited for what seemed like a tortuous eternity.  Anyone I’d shared the information with would continuously tell me not to worry because it was probably going to show everything was just fine.  Sean read statistics on the inaccuracy of prenatal tests.  Me?  I lurked on websites about Down syndrome, convinced it was because I am a notoriously glass-half-empty kind of gal, but really it was because in my gut, I knew. And I also knew that there were far worse things for a child to be born with than DS but it didn’t change the fact that the baby I had dreamt up in my mind would more than likely not be the baby I would have.  We had friends over for an early “Friendsgiving” meal, deciding that although neither of us knew how to cook a turkey and had never hosted a party indoors in our small house, why not have 20 people over?  We’re all in people, always have been.  If nothing else it served as a distraction from sitting by the phone, imploring it to ring. 

It finally rang, on Veteran’s Day.  The test showed positive results for Down syndrome and they wanted us to go to a fetal-maternal specialist for an in depth ultrasound.  I was wrecked again.  No matter how many times I’d told myself this is what it was going be, it was still a sucker punch.  And so we went.  I laid breathlessly on the table while they looked at every inch of this teeny little being searching for “imperfections” that were synonymous with Down syndrome.  There were none.  He was perfectly, structurally fine.  It was a boy.  Jack.  Jack Doyle.  When the doctor stepped out of the room, I sobbed and told Sean how sorry I was.  How sorry I was that the little boy we’d always wanted was not the little boy we were going to have.  He still seemed fine, assuring me everything was ok.  When the doctor came back in I realized why this was.  He started asking about the accuracy of the latest test we’d had and how we could be 100% certain.  Not because it changed anything but he likes to have all of the facts, in all facets of his life-it’s how the man operates. They started speaking about additional tests but I tuned it all out as soon as I’d heard amniocentesis.  There was no way I was doing that- I look away during a simple blood draw- a needle in the stomach was off the table.

We told our families and friends and although there was a shared sadness, everyone was extremely supportive.  But they served up platitudes such as “God never gives you more than you can handle”, “Special babies get special parents” and the like.  I knew we could handle this, but truth be told, I didn’t want to.  I know how that makes me sound, honest, I do.  It’s just that I was saying goodbye to the baby I thought I was having.  It felt like I was giving up this wonderful life Sean and I had carved out for us. 

But because I had never been a sit-around-and-cry-type, I got to work.  I bought books.  I scoured websites.  I looked up the local Down syndrome resource agencies.  I talked about all of these things with Sean, telling him I wanted to make sure we were as prepared as we could be.  Pretty quickly, I came to realize that the reason Sean seemed so fine was that he was basically in denial.  He talked about Jack using words like “if he has Down syndrome”.  It made me nuts.  We were always on the same page; I didn’t get it.  What was this “if” business?  He brought up the amnio again and I went nuclear.  How could he sit back letting me do all of this work while he looked for ways to prove this wasn’t happening?  I called the OB office and asked if we could discuss everything again and let Sean ask his questions that were allowing him to take up residence in la-la-land.  And so we did.  The doctor told us, in his gentle and soft tone, there was no other way for 100% certainty to know if Jack did indeed have DS than to undergo the amniocentesis.  The results would take about 3 days and then that would be it-there would be nowhere to go but forward.   I told Sean that I didn’t want to do it but that it wasn’t just about me; that if this is what he needed to get on the same page as me that I’d do it but that he had to say it.  And so he did.  They could do it that day we were told (of course they could, isn’t that just my luck!).  So I begrudgingly had a needle inserted through my stomach.  It was as if the last shred of hope we had was being suctioned out. 

3 days later, they called me back.  It was positive for Down syndrome. And it crushed me all over again.

Just like that, Sean, my action man, was back.  He got on board and did his research too.  We were learning and it was looking like we were actually going to be able to handle this just fine.  We were going to make sure that Jack got everything he needed come hell or high water.  The holidays came and went. Right before the New Year, we went and talked with someone at the Down Syndrome Aim High Resource Center.  She welcomed us into their little community, gave me more to read and told us about all of the support we would find.  She offered us the hope I thought was gone forever.  We left there feeling really positive and optimistic about the kind of life we would all have as a family. 

I had a renewed sense of purpose.  I was a machine.  And more than anything I felt excited again to be having a baby.  It had been so long since I felt any kind of enjoyment and I felt guilty for having wished it to be done with.  Although I was scared about so many unknowns, Jack’s health when he was born my chief concern, we’d been told everything was looking great; his heart was perfect.  So I let myself be happy.  I was excited and knew that everything would be fine as soon as I could hold my boy and look at him.

Typical of our family, we got sick after the holidays. Bad.  Kennedy got sick first but weathered the storm like a champ.  Out of nowhere I got hit and was completely overtaken by the flu.  I ended up being hospitalized for 3 days so they could monitor me, but Jack was looking good the entire time.  There were no concerns.  I got out of the hospital the same time poor Sean was hit but eventually it worked its way out of our house.  Less than a week later our whole world was up-ended again.

Monday, I went back for another ultrasound, honestly a little bored by them at that point, as I’d had so many already.  When the doctor came in after to talk she told me they were sending me back to the specialist right away.  They were concerned by the excessive amount of amniotic fluid and that the baby looked to be full of fluid as well.  I was crushed.  I remember calling my mom and crying saying I had had enough, I just wanted this pregnancy to be over, that it was doomed from the beginning and that I couldn’t wait to just have him and be done.  We went to the specialist the next day and from that moment on we were in overdrive.  He used words like pleural effusion, chest tubes, leukemia, premature delivery and sudden death.  He told us he was sending us to the Children’s Hospital of Philadelphia (CHOP).  It involved a lot of finagling with insurance companies but we were set to leave that Thursday to be ready for our 7am appointment on Friday with a team of specialists.  All we really knew was that there was a real possibility of us having to be down there for quite awhile.   As we lay in bed Wednesday night I cried to Sean that it felt like were leaving our perfect life behind.  I was right.

We drove down to Philly with a bag full of snacks from my awesome friends, a ton of clothes packed, some baby things.  We had dinner that night at a nice restaurant and talked about we thought we could expect.  We truly had no idea the magnitude of the situation we would find ourselves in.  We awoke early the next morning and made our way to CHOP.  My mom would be coming to meet us a bit later.  We had ultrasounds, met with genetic counselors, specialists and neonatologists.  It was very serious.  Jack was incredibly sick and getting sicker.  Both of his lungs were completely filled with fluid and there was a lot of fluid under his scalp as well.  Even as they told us how serious things were, I don’t know that either of us was really absorbing what was happening.  They told us that they were going to try and aspirate his lungs and drain some of my amniotic fluid but that he may not tolerate the procedure and if it didn’t go well and he had to be delivered at 30 weeks he would not make it.  Even though I had received the steroid injections days before to help mature his lungs, the Down syndrome was a complicating factor and he wouldn’t be strong enough.  Strangely, the glass-half-empty part of me was being silenced by a mother’s desperation for everything to be all right.  This couldn’t be happening; he was fine just a few days before.

So once again, it was a needle in the stomach- 3 of them to be exact.  I didn’t care.  They could stick me a thousand times if it would have helped him.  They seemed really pleased with how it went and told me that I could leave but to stay in the area and come back on Monday so they could reevaluate us.  Saturday we met my mom at family’s house just outside the city and spent the day trying to keep busy.  Jack wasn’t moving too much, which was odd since he was usually so active but I thought maybe he was just up at night and I hadn’t noticed the change in pattern.  He was still moving though so I wasn’t too worried.  When I woke up Sunday though, I just wasn’t feeling him.  I was in a panic.  The hospital had said to call them if I wasn’t feeling him so I did.  They told me to come back. 

We again made our way there with a nervous energy.  Sean was trying to calm me but it was no use, I was too far-gone.  Two nurses met us at the door of the Special Delivery Unit.  They immediately took me to have another ultrasound to monitor Jack’s heart.  It was beating.  I was so relieved.  Except then the neonatologist on call spoke.  She said both of his lungs had filled back up again, which meant that, as they had feared they couldn’t treat this.  There was nothing they could do to help him.  I couldn’t hear that.  I was his mother; I wasn’t about to let them do nothing.  I demanded to know what could be done.  She explained it was going to go 1 of 3 ways.  I could go home and he would most likely die en utero, they could deliver him an immediately put chest tubes in and try to drain everything but that it would be painful for him and they were 100% confident it would not save him, or finally they would deliver him and just let us spend whatever time he had with him, but that in no scenario were we going to go home with our baby.  I was stunned. It was brutal and seemed cruel.  But truthfully, it was the first time we finally understood what was happening.  Jack was going to die.  As so, as his mom and dad, we made the hardest decision I hope we ever have to make.  As parents are supposed to do, we chose to protect him from any pain and suffering.  We decided to let him go after he was born but to love him and have him in our arms as he went. 

It was all a blur.  We called our parents to tell them what was being done, or not being done in this case.  We asked them not to come.  We wanted to have him to ourselves for however long that would be.  For the first time since I’ve known him, Sean sobbed.  And though I was sure there was nothing left of my heart to break, it burst once more into a million pieces.  The boy I’d fallen in love with almost a dozen years before was as broken as I was.  We prepared with the 2 most gentle and caring nurses, social worker, neonatologist, surgeon, and chaplain to say goodbye to the little boy we were so ready to give the world to.  They helped us cultivate a plan that would allow us to make the most of what few precious moments we would have with Jack. 

As I was wheeled back into the operating room I was conscious of the life I was being wheeled away from.  I knew that once I was in there we would be sent on trajectory that would change everything. 

And so it began.  With Sean by my side Jack Holden Doyle was delivered at 3:32pm on Sunday, January 25, 2015.  Though he was 10 weeks premature, he weighed 4 pounds 9 ounces. He never cried.  But he was alive.  They immediately placed him in Sean’s arms; a Catholic priest whose face I never saw but whose voice I will never forget baptized him.   They took him back only once let us know it wouldn’t be long. I saw him breathe. I felt his presence. But I was not able to hold my baby before he passed; I felt too sick and dizzy from the anesthesia.  I immediately hated myself for being weak.  When the surgery was over Jack Holden was placed in my arms and his tiny little body left a weight on my chest that if I close my eyes, even now, I still feel so clearly. 

We spent a few hours with him.  Taking in and memorizing every inch of him. This was all we were going to get.  These were immeasurable moments.  We needed to fit an entire lifetime of memories we were supposed to have into minutes.  It wasn’t enough.  The reality of this was paralyzing.  We decided it was time to let him go and give him to the nurses to take away.  We were never going to see our baby again.  I felt like I was dying.  I gave him to Sean who held and kissed him one last time before giving him back.  We gave our son back.  Sean held me as I sobbed.  It was a sound I didn’t know I could make-I’m still not positive it came from me.  By that time I felt like I had no tears left to cry I realized:  I forgot to look at his feet.  And they started all over again.  I’ve learned that in losing a child, the supply of tears is endless.

You’d think the day your baby dies in your arms would be the worst day of your life.  It’s not.  The worst day of your life is the next day when you wake up and come to terms with the fact that it really happened.  It was not nightmare; he really is gone. 

The care and support we received the next few days is something I knew even then we should be grateful for.  They had taken pictures for us, did hand and footprints, and they did 3-D foot impressions; the feet I thought I’d never see.  The most wonderful psychologist sat with us and helped us formulate how we were going to get through the first few days.  We talked about how we would explain to Kennedy she would never get to meet her baby brother.  I had been afraid to get her a fish because I didn’t want her to learn about death too young- I never in a million years thought her first experience with death would be this, at 2 ½ years old.  It was wrong.   The whole thing was wrong.

Wednesday came and it was time to go.  The safe cocoon we were in was about to unravel.  As we prepared to leave I was terrified.  We couldn’t do this alone.  I felt like I couldn’t live if I wasn’t being forced to.   But then I remembered the little girl waiting for us back home.  We made our way; painfully slow, out of the hospital.  I sobbed the whole way.  When we got to the parking garage, I couldn’t move.  Once I exited the hospital for good that was it; it had really happened.  The boy I had once been afraid to raise; the boy that had come to occupy a place in my heart I didn’t know existed was gone. 

Sean took my hand.  Together, we made our way back to the car that had carried us here.  No not us.  Two people we used to be.  We got in the care and drove home to the life we’d left behind. 

Grief is a wild beast.  It is feral. It is unpredictable.  That is one lens from which to view grief.  But the other side is love.  The thing about grief is that it is the steep price we pay for love.  The more you loved the more you will grieve.  Anyone that has had children knows that a parent’s love has no limits and so I don’t know that the grief will ever subside, it will be carried in me as long as I breathe, in yet another part of my heart I didn’t know existed. So this is the story.  The story many people are too polite to ask me to tell.  It is sad story, yes.  But more than anything, it is a love story.