Kansas

No, we did not take a wrong turn coming back from Delaware and end up in Kansas.

I have to admit the trip back from Delaware and honestly the whole trip in general was not nearly as bad as I had thought it would be.  I guess one of the good things about having anxiety is that you build things up in your mind to be so freakin bad -- that when your family vacation doesn't end in divorce or putting your kids up for sale in the used section on Craigslist -- things don't look nearly as bad as you originally made them out to be.   That's kinda what happened in Delaware.  I feared the worst and what happened was actually manageable.  Note to self:  stop giving your husband a bad time about things like long car rides, his family, and anything he wants to do in general.  It's probably not going to be that bad.

So, made it back.  On to next adventure.

The next adventure started the Sunday morning after we got back from Delaware when we hosted our dear friends and fellow heart family from Kansas for a week while their fifteen month old visited Children's to have a follow-up catheterization.  

We met this family back in March of 2011 because of my penchant for stalking heart families.  And we've been friends ever since.  Quiet a lot has happened since we first met and thankfully they left Boston a week ago today with a successful catheterization and the news that their daughter will not need any major intervention for close to eight years when they will do a valve replacement during a cath.  This means no more open-heart surgeries.  It is the outcome every heart family hopes and prays for given the diagnosis -- once the open hearts are behind you -- you can begin to normalize again as a family.  Or at least -- that's the goal we are all working towards.

Looking back at how we met, how we stayed in touch, and how they were able to leave here this time with such great news -- it's absolutely amazing to me how lucky I am to know the few heart families that I do.  I can't help but reflect on just how lucky we all are, and also just how similar yet different all of our journeys have been.  I’m grateful for a lot of things in my life clearly – but a big one has been the sheer luck and I guess divine intervention that has brought us all together.

In March 2011, I was just about to celebrate the first birthday of my daughter (and by first birthday I mean surviving two open heart surgeries, multiple caths, a week on life support, food allergies with crazy GI regimens, tons of physical therapy and follow-up appointments from Neurology to Audiology -- my point is -- there was much to celebrate :) I was also three months pregnant with our second child.  Which brought me right back to Children's because they wanted to monitor this second pregnancy very carefully after what had happened with our daughter.

Here we were back at the Advanced Fetal Care Center, hoping on hope that my second pregnancy would not also have a cardiac anomaly.  Given that there is an increased chance after having a child with a CHD that subsequent pregnancies could result in a congenital heart defect -- but because they still aren't even sure why these CHD's happen in the first place -- it's very hard for them to know if it would in fact happen again to the same mother.  So, just nine months after giving birth to our daughter -- we found ourselves at the Brigham and at Children's having ultrasound after ultrasound and fetal echo after fetal echo.  Scary, yes.  Getting struck by lighting twice in one lifetime?  We're gonna knock on wood, cross all our fingers and toes, and go with highly unlikely.

So, I'm waiting for an ultrasound and I see a very pregnant woman who looks my age, being shown around the hospital the same way I was in October 2010.  She looks like a truck has hit her and I remember that numb look on my own face.  The social worker's arm lightly placed on your back as she guides you around the hospital in a zombie-like state from the Brigham's Maternal Fetal Medicine to the Advanced Fetal Care center, explainingt the potential of having an experimental Fetal Intervention surgery done on you while you are still pregnant to try and repair the heart before the baby is even born, to the final walk through 8 South -- the cardiac ICU -- where you have to try and wrap your head around the fact that this place with all the tubes, wires, and machines attached to these tiny newborns is where you will come to meet your baby for the first time after giving birth.  Let me just say this -- after our post-diagnosis "walk through" my husband broke down in tears and said, "Please God, let this be the worst day of my life."  Thankfully for us so far-- it has been.

You know how hospitals can be -- not fun.  Who the hell knows what's happening for the people around you -- you have no idea -- so not exactly the ideal setting for striking up a random conversation with someone you don't know.  The thing was, I could have sworn I heard the social worker mention Pulmonary Atresia when she introduced this pregnant woman to the admitting lady in the ultrasound room -- but then I reminded myself of the rarity of Pulmonary Atresia (7:1000) and thought I might be making myself think she had the same diagnosis as I did.  So, I let it go.

But we kept running into this woman and her husband at every turn of our long day of appointments.  Ultrasound, blood work, consults...finally we are finished for the day, walking across the bridge from the Brigham to Children's and there they are for the millionth time -- just a few paces behind us.  I say to my husband...."There right behind us again.  I want to say something.  What if they actually have the same diagnosis?  What the hell would be the chances of that?  We should introduce ourselves -- maybe we can help them or at least just let them know we know how scared they must be."  My husband, who could probably recite the actual legal language of HIPA, said, "Molly, just leave them alone -- this is probably the worst day of their lives we have no idea what's going on for them."  I thought about it for a second and then immediately turned around and introduced myself.  I had to know.  I didn't want to be alone anymore with potentially someone just like me only a few feet away.

I told them we had a one year old with Pulmonary Atresia with Intact Ventricular Septum and that I was also seen at the Advanced Fetal Care Center.  We all knew just how rare it was to have the same diagnosis and we knew how important it was to be able to have the team in Boston try to help.  We barely exchanged names and we were already hugging each other in the hallway.  We told them we were taken through the same long day of appointments and overwhelming consults just one year ago.  That our daughter has made it through the first two open-hearts and we have one more to go.  Two families, two PAIVS diagnosis, from two different states, hugging on the bridge between Children's and the Brigham.  This was just the beginning.

We offered them a ride to the airport because they had flown in from Kansas the night before and they were leaving that afternoon.  An ultrasound tech in Kansas identified the heart defect late in the pregnancy, they were referred to a cardiologist, who after deciding it looked like PAIVS encouraged them to go to Boston if they were able.  Boston would be the best chance for their baby.  Very similar to our circumstances – expect for one major detail.  We lived twenty minutes from Boston.  Them?  Not so much.  And what I simply could not get out of my head was the thought of having to travel to a city I'd never been to in order to go through one of the most gut wrenching experiences of my life.

Imagine?  Getting a diagnosis like this and then having to find a way to get to Boston from Kansas?  This family is keenly aware of how lucky they are to have been able to come to Boston.  Now just think of all the families who can't get here.  And in our case --Boston was our home.  If our daughter was going to be born anywhere on the planet -- she ended up being in literally the exact place she needed to be.  Now, what on earth are the chances of that?

But it's a tricky thing to get involved with another family.  You hope everything goes right and you can help one another along the way -- problem is -- so much can go so wrong and then you're left wondering why us and not them?  Why them and not us?  There was no way to know how their baby would fair or what the outcome would be.  Children's was very clear with each heart family they meet -- literally no two cases are ever exactly the same.  Not to mention that no two families, marriages, or experiences are ever the same.  So it's hard to form relationships based on a diagnosis like this because in all honestly there is no guarantee that these kids will survive or how they will fair after these super invasive surgeries and procedures.  If your child is lucky enough to survive you are never 100% sure what their quality of life will be or if other physical or neurological issues could potentially stem from their heart condition.  As much as they can tell you at CHB and amazing as the science is -- there is so much they simply just don't have control over.  And they have to be frank with us about that fact.  You have to be prepared for everything and anything.

But I couldn’t let all those things get in the way of just biting the bullet and attempting to befriend this couple.  I felt that for better or worse, something or someone had brought our families together for a reason.  I just couldn't get over how coincidental it was that I was back in the hospital, an entirely different pregnancy and this woman just kept coming across my path.....it had to be for a reason.  It just had to.  The numbers are too small.  I guess I did a quick gut check before turning around on the bridge and knew in my heart that if nothing else maybe would could at least be a guiding light to them - a small measure of hope for what they were up against.

We talked about a million things during the short ride from Children's to the airport.  We tried to get to know each other as quickly as possible.  Mum would have to come out to Boston alone ahead of the scheduled induction while Dad stayed home with their seven year old daughter who was in school.  When Dad and daughter fly out for the birth, they’d have to arrange for someone to take care of their daughter while they were in the hospital.  They had to find housing and there was no telling how long they’d be in the hospital after the baby was born.  They'd have to be away from home -- away from family and friends.  I just couldn't imagine that.  I am still so grateful to this day, to have been in the exact place I needed to be to have this difficult experience -- with everything I was familiar with and with everyone I knew right at my fingertips.  I couldn't stomach the thought of this family going through what we had just been through away from home.  So, I told them that right before they headed into the airport to head back to Kansas to start planning for the arrival of this baby.  I told them I wanted to be there for them through this if they were willing -- that we would be their Boston-based support team and that we would make sure they didn't have to start from scratch trying to figure Boston out on top of everything else.  After we said our goodbyes, wished them luck with the thousands of decisions they had in front of them to make and they headed into the airport and back to Kansas.  Over the next few weeks, we talked with them several times over the phone, helped them set up a carepage, gave them some housing advice, and counted down the weeks until their final arrival back to Boston for the baby’s birth.

I picked up the Mum at the airport a few weeks before her scheduled induction and we got her settled in her temporary apartment.  In a pregnancy like this – everything becomes planned for you.  The appointments and monitoring of the baby leading up to the scheduled induction are grueling and nerve wracking.  All I wanted to do was keep her distracted, make sure she knew she wasn’t alone as each day passed – knowing all she really wanted was to be reunited with her family – and honestly at this point – just rip the Band-Aid off already – let’s get this show on the road.  The waiting is torturous.  However, as brutal as coming to Boston alone had to of been for her -- selfishly, these few days with just her were very special to me.  It was unbelievably cathartic for me to get to share this time with her – we talked candidly about this experience and all the emotions that go along with it – having her listen to my story and share her own story with me was one of the greatest gifts I’ve ever been given.  It might have happened a year later than I would have liked – but I kept reminding myself if I could be there for her in the way only someone can whose been through this – than I’m paying forward the very thing I had longed for when it was me.  And as planned and scheduled as everything was supposed to be…this little one had a plan of her own.

On Marathon Monday, April 19, 2011, at four am in the morning -- a good week before the scheduled induction -- her water broke.  She called the team at Children’s to let them know they'd have to assemble themselves a little more quickly than originally planned, she called her husband who immediately started making arrangements to be on the first plane to Boston, and then she called me.  She was getting into a cab and heading over the hospital.  I immediately got in my car and met her there.  Here I was in Labor and Delivery one year after going through this myself – but this time I was on the outside looking in.  Not too many experiences in my life have had a second go-around quite like this one.

So here was this lovely new friendship being formed under already pretty rough circumstances.  Now add labor and delivery into the mix.  Let’s be honest – there’s really no better or sure fire way to dive right in and get to know someone really well than being in labor and delivery together.  But here we were.

I stayed with her for almost twelve hours – leaving her only to go get her husband at the airport and get him straight to her.  But once they were together, I knew I had done all I could and being five months pregnant myself, I knew I needed to get home and back to my own family.  So, I gave her a quick kiss on the forehead, told them both to try and stay strong, went home, and waited.

They baby was born, stabilized, and brought over to Children’s. The first few days are extremely critical as you can imagine.  The cardiologists decided that in this baby’s case they might be able to open the pulmonary valve and try to get the half of the heart that was not developing to start to grow.  After this procedure the baby had trouble stabilizing because of the change in blood flow and it was a very scary couple of days.  You have to remember -- what the doctors at Children's do is they change something that wasn't supposed to work into something that does -- but the body has to adjust to this -- sometimes, the body can't quite handle the amazing things these doctors can do.  You have to hope and pray that the very thing they have to do to save your kid doesn't end up killing them.  Weird, right?  So starts the roller coaster ride.  Having been there ourselves, we tired to provide them with as much support as we could while making sure they had the privacy they needed to cope with all the ups and downs that go along with this situation.  Thankfully, the baby started to do better, the pulmonary valve was open and functioning and the ventricle was responding well.  It looked like this baby was going to have a four-chambered heart with two functioning ventricles.  Unbelievable.  No one could have guessed this would be the outcome.  This is why you come to Boston.  This is literally the stuff that dreams are made of.  By the first week of May, we found ourselves again at the airport with their most precious cargo in hand on their way back to Kansas.  Remarkable stuff.

Before they left last week – we sat around the table reveling in the fact that in the end – after the initial diagnosis and everything they’d been through -- she came out of the cath doing great and her two ventricle heart function is a good as you could ask for.  This baby was more likely to have a one-ventricle heart than not – like my daughter.  The fact that this little one survived all that she did and now has a full heart rather than a half….well….it’s hard to describe what that kind of gratitude and thankfulness feels like.  It’s also a prime example of what they talked to all of us about when this whole thing started….no two families will have the same outcome.  They just can’t tell you where you are going to fall on the lucky scale – or if you’ll even be on it at all.  Man, all four of us as parents are so completely humbled to be some of the lucky ones.

We are beyond thrilled for this family.  We are beyond grateful for their friendship.  For any heart family, there will always be bumps in the road ahead – because no matter what the outcome – our children will likely always need additional caths, procedures, medications, etc.  Some of us will still have open hearts ahead of us, some of us will never have another surgery, some of us will only have to see our cardiologists once or twice a year, while someone else will have to go once or twice a month, or even once or twice a week.  We really can't know what our children’s physical limitations will be along the way as they get older or what their health will look like as adults or older adults  – they still have so much to learn about how these hearts they've fixed will fair later in life -- I mean seriously think about it -- it's only been thirty years since they've been able to figure out a way to even save these kids lives in the first place -- we'll have to walk the walk with them as they continue to observe our kids and do the research along side us as they grow. 

But that’s ok.  We have our children.  We have the families that we hoped and dreamed for just like everyone else.  Both of our families were given the news that our babies had half a heart with no pulmonary blood flow.  That they cannot survive when they are born without intervention.  One has one ventricle and the other miraculous now has two.  All that really matters is that they are both ok and they are growing and thriving little girls. 

Thank you for putting the four of us together on the bridge that day.  Out of a dark and scary time in both of our lives a friendship has been forged that now is full of light and hope.  We will be lifelong friends because of this shared experience and the best part is…..now we get to move on to the fun stuff, together. 

Next time Kansas....we’re coming to you :)