Before
we had kids we knew very little about organ donation. It is something
that very few people seriously think about. I think we all read a story
in a magazine or hear a news story about organ donation and probably think to
ourselves “how nice” and don’t give it a second thought.
That
all changed for us when my son, Russell, was born on August 5, 2008.
While my wife (Susan) was pregnant with Russell she was diagnosed with a
congenital heart condition which caused some significant concern. Could
Susan take this pregnancy to term with this heart condition? Several
follow up visits were planned regarding the pregnancy and a fetal ultrasound
was done as there was a possibility that our unborn son could have inherited
the condition. Fortunately, Susan was able to deliver Russell, at St
Boniface Hospital in Winnipeg, with no issues.
Soon after he was born,
Russell was diagnosed with his own congenital heart defect. Although we
were aware of the risk, I remember the shock when we were given the diagnosis.
It wasn't the result we had hoped for. The condition Russell
inherited was different than the condition Susan has. We didn't
understand. There were lots of questions. Susan and I met with two
cardiologists and a nurse clinician who introduced us to the new life we were
about to embark on. That initial appointment was like a blur to me,
however I remember our cardiologist talking to us about all of the possible
scenarios. He was preparing us for the roller coaster ride ahead.
We had no idea what the future would hold. He discussed several
options and possible treatments. He discussed several of the drug
therapies that could possibly help Russell. As a footnote to the
conversation, and almost as an afterthought, he said “if everything we try
doesn't work, and we exhaust every option there is always transplant.” We half-heartedly chuckled at that comment
thinking that was such a remote possibility; that could never happen.
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| Russell at St Boniface Hospital - Aug/08 |
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| Photo taken Oct 2, 2008 In a few hours we would go to the Emergency Room at Children's Hospital in Winnipeg |
Russell
thrived in his first few weeks. Making us think that this “heart
condition” wasn't that big of a deal. That entire train of thought came
to a screeching halt after we took Russell into the Emergency Room when he was
8 weeks old. Russell didn't display any dramatic symptoms; to us he just
didn't seem right and our instincts were proven correct. A couple of
hours after arriving at Emergency, Russell went into Cardiogenic Shock.
This was the sudden crash that we had feared. Given the extreme concern
and amount of commotion around Russell we knew this was serious and were not
sure if Russell would make it through the night. This was the moment that
the off handed comment from our cardiologist came rushing back to us.
What could they do for him? Would that remote possibility of a transplant
now become necessary?
After
Russell was stabilized in PICU, he was by no means out of danger. If his
condition degraded he would certainly need more help; help that could not be
provided in Winnipeg. The search for a bed in a more specialized facility
began in earnest. Now, being faced with a very grim reality that Russell’s
heart was seriously compromised some serious discussions needed to take
place. After a sleepless night and nearly losing our son we wanted a
solution; any solution and we wanted it now. We talked with one
cardiologist and then another. They began discussing with us about the
possibility of a Heart Transplant. I think our reaction must have taken
the cardiologists by surprise because we required no convincing we were asking
where, when, how fast. We had to be calmed down a little. The
reality we were facing was explained carefully and thoughtfully. First,
Russell had to be stable. We then would be sent to a facility where they
could better manage him and where they had specialized technology and equipment
that could intervene if his condition deteriorated. This all sounded slow
and painful to us. If you could have read our minds we would have been
saying “ let’s quit fooling around, let’s get listed for transplant
already…what’s the hold up????” This is when it started to sink in; the
reality of the transplant. This was not an instant cure. This was a
process. We had many hurdles to cross before we could even think about a
transplant.
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| Arrival in Edmonton - October 2008 |
Later
that day, only a few hours after we came into emergency we found ourselves
wheeling our son out of the hospital and into an ambulance headed to the
airport. He was heading to the Stollery Children’s Hospital in
Edmonton. Because of the size of the airplane we could not fly with
him. Try explaining that to a mother. Susan and I found ourselves
heading to the airport to catch a commercial flight to Edmonton. Hoping
and praying our son would make it through the journey that he was now facing
alone. We did receive some comfort when we landed in Calgary for a
connecting flight to Edmonton. I checked the messages on my phone to find
that our transport nurse from Winnipeg had left a message that Russell arrived
in Edmonton with no incident and that he did well on the flight. This
provided us with some relief. We arrived in Edmonton, not having slept for
41 hours; the date was Oct 3, 2008. This was our 16th wedding
anniversary.
The
PICU at the Stollery was a whole new world to us. We arrived late on
Friday night. We dropped off our bags at our hotel and quickly headed to
the hospital. We saw our little boy wired to every pump, infusion, and
monitor known to man. Somewhere in that mess of wires, and tubes was our
Russell. He had arrived safe and sound. We had no idea when we
might return home. Our adventure had begun.
The
next morning (Saturday) we made our way back to the hospital where our PICU
indoctrination began. To this day, I live in awe of ICU staff. They
are the absolute best. Our bedside nurse began slowly and gently making
us aware of next steps and what we could expect. This was a
journey. She told us this is a “marathon not a sprint.” As much as
we wanted a quick fix and to get back home, that was just not a reality.
Our first two days in PICU were on a weekend which was a blessing in
disguise. We thought PICU was a crazy place, and then came Monday.
This is when the weekday staff showed up. It was a constant stream of
various specialists in a variety of fields. Everyone agreed that
transplant was the likely option but we had to meet several criteria to even
get listed. Russell was recovering nicely from his initial crash and that
was very encouraging for everyone but it slowed the process of getting
listed. It was a good news/bad news situation. In this first week,
Russell had to have several tests to ensure that he was a suitable candidate
for a transplant. Neurology, Metabolics, GI, Cardiology…all of the
“ologies” had to evaluate Russell to ensure he was a good candidate. We
as parents had to be evaluated to ensure that we could handle the day to day
responsibilities of caring for a transplanted infant. Then the harsh
reality sank in. Why all of the evaluation? Why all of the
bureaucracy? Availability of a donor heart is such a critical issue and
ensuring that Russell is appropriately prioritized was the reason for all of
the care and evaluation.
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| PICU at the Stollery: You have no idea how much work it took to make it possible for a Mom to hold her son...but they did! |
Availability
of a donor heart is the frustration of everyone waiting for an organ
donation. The issue we had no control over. A heart could become
available in 2 hours, 2 days, 2 months…there was no way to predict. The
other issue is that it couldn’t just be any heart. The critical issue for
an infant is that the size of the heart is most important. It has to
physically fit into Russell’s chest. This means the heart must come from
another infant similar in size to Russell. This was the next
realization. To this point a transplant was a benign organ from an
unknown source. Although it seems intuitive it isn’t anything you think
of when your baby is dying…you just want his life to be saved. Now that
things were stabilizing we had time to think about the gravity of the
situation. For Russell to live; another family would have to go through
what we just went through and they would lose their infant child that our son
could live. These are the things that repeatedly churn through your
thoughts as you spend hours and hours in a hospital. After one week in
Edmonton and after all of the analysis and evaluation Russell was listed for
Transplant. Status 4…highest priority. Oct 12, 2008. It was Thanksgiving
Weekend. Indeed, we had much to be thankful for.
We
were now listed. Now the waiting began. Russell recovered enough
that he was able to be moved out of the PICU and onto a regular ward. For
two days. While on the ward, Russell had a setback and he was moved back
to PICU. Any hope for us to wait quietly and patiently for a donor heart
was now over. It was “game on.” It was time to strap on the helmet
and tighten the chin strap…this was going to be a bumpy ride. Over the
next two weeks Russell would slowly recover but then have a setback. Each
time the recovery took a little longer. Things were degrading…Russell
fought tooth and nail but his malfunctioning heart was slowly losing
traction. I am not prone to curse words or harsh language, but this was
“hell”. Every parent’s worst nightmare and we were losing the
battle. We needed reinforcements. This is why we were at the
Stollery in Edmonton.
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| Halloween 2008 - PICU - We were living on the edge. |
Halloween
was awful, Russell was struggling. We knew his heart was failing and we
were hoping for the “Hollywood” ending. In the nick of time the donor
heart would arrive at the 11th hour just in time to save the
day. It never happened. Nov 3 our time was up. In the early
hours of the morning we were called at our hotel and summoned to the
hospital. Russell had gone into V-Tac. He had CPR for about 3
minutes and had to be defibrillated. Our time was up. The next day,
thankfully, Russell was stable and plans were made to book the OR and implant
the Berlin Heart. It was a necessary evil.
This
was a turning point for us. For a month, it had been a slow and steady
decline backward. The surgery to implant the Berlin Heart was an opportunity.
Russell came through his surgery amazingly well. In the few hours
after the surgery there were smiles in the PICU. We had this new device
and regardless of what happened it would pump. Things were beginning to
move in a positive direction. In a week we were making plans to get out
of PICU and on to the ward. At this point transplant was not a priority
in our minds. Getting used to this new machine and having our son’s vital
signs stable was a novelty. With the Berlin Heart we had our exclusive
Berlin Heart Doctor who spent an immense amount of time with us. I think
Holger was a great influence on us and he was so positive. With the
Berlin Heart also came many visitors as this was new technology and the pump
Russell got was a 10cc pump, the smallest device they can implant. It was
the dubbed the “Baby Berlin”. Every day Russell got better and recovered
more. When we arrived on the ward we began being parents again. We
got to hold Russell and we were taught how to feed him via pump. It once
again felt like we had a little bit of control. The transplant was still
in the back of our minds but this machine was so cool and we had our son
back. November went by. My son and I watched the Grey Cup
together. We had some visits from family and friends. We were OK
but now the impatience of waiting was beginning to weigh on us. Christmas
was just around the corner and we knew we would be in hospital for
Christmas. Even if we got our long awaited for transplant we would still
be in Edmonton for Christmas as we were told that we were required to stay for
up to 6 months after the transplant. This was indeed going to be a long
journey and at this point there was no end in sight.
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| November 2008: Russell with his Berlin Heart Photo courtesy of Stollery Children's Hospital |
During
this time we also had some time to consider Susan’s health. Her heart
condition had taken a back seat to all of the events happening to
Russell. Fortunately, we had excellent Doctors in Edmonton. Susan
was referred to a cardiologist in Edmonton, who was able to look after her
while we were there. They were definitely treating the whole family.
There
are two primary sites in Canada that do pediatric heart transplants, Toronto
and Edmonton. This means that all of the kids who are waiting for
transplants are in one of these two facilities. In our case there were
three of us in the same room. One of our friends got their heart in early
December. She was lower priority than Russell but she was also older and
was able to take a bigger heart. It was frustrating but it didn’t bother
us as she had complications post op related to the heart being slightly big for
her. We realized this definitely would have not worked for Russell.
Then Christmas eve another little girl received her heart. This was much
tougher on us as it was Christmas. Where was our Christmas miracle?
Even more frustrating was that our cardiologists conducted two Echos by two
different doctors to make absolutely sure this heart wouldn’t be a fit for
Russell. It was not a fit by the smallest of margins. We were so
close but it wasn’t meant to be. The frustration of waiting had really
set in at this point.
Finding
a heart that was a suitable size is a significant challenge. We did,
however, have a significant advantage. Babies under 1 year of age have
under-developed immune systems. Because of this, babies have one unique
opportunity that there adult counterparts do not have. They can take a
blood type mismatched organ (ABO incompatible). Russell would not have to
worry about the blood type of the potential donor. This significantly
increased the odds of him getting a suitable heart.
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| Me and Nicole at Edmonton Int'l Airport - One of our many trips to the airport. Saying goodbye to Nicole and being separated from her added a whole different kind of stress. |
Our
daughter Nicole, was 2 ½ years old when Russell was born. One of our
hardest decisions was to leave her in Winnipeg with Grandma while we stayed
with Russell in Edmonton. She joined us several times in Edmonton for
visits (which were great visits) but it reinforced the decision that she stay
in Winnipeg. Hospitals are difficult places for toddlers. At
Christmas, Nicole joined us again and we had Christmas at the hospital.
This was a very bittersweet experience. I have to say the hospital pulls
out all the stops at Christmas; they really go above and beyond. It is
also worth noting that there are some great organizations that support
transplant families during these trying times.
Flights back and forth from Edmonton to Winnipeg are not inexpensive and
thankfully the David Foster Foundation funded these numerous trips that we
made. A fantastic organization that specifically
supports transplant families with their non-medical costs.
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| Dec 25 2008 - A Hospital Christmas |
After
Christmas, Nicole and Grandma were booked for a flight back to Winnipeg on the
evening of Dec 29th. Susan and I spent a great deal of time
devising any scenario possible to keep Nicole with us. Russell was stable
and doing so well, we could easily have her stay with us. However, if
something happened to Russell or if we got the transplant it would become very
difficult. With all kinds of doubts and a significant amount of guilt we
waved to our little girl at the airport and sent her back to Winnipeg. We
went back to our hotel that evening with very heavy hearts.
The
next morning, (Dec 30) began normally enough. Susan was nearly ready to
make her way over to the hospital and I was just getting myself organized for
the day when the phone rang. One of the strangest phone calls I ever
received. I must have still been in a morning fog as I really didn’t
understand the person on the other end of the phone who spoke with a very thick
accent and said something about an “offer” “A heart” and that we needed to come
in and make plans. What? Did I hear that right? A
heart? I am sure to Holger I must have seemed like I was on another
planet. I really couldn’t comprehend. Susan walked out of the
bathroom and asked about the call. I’m sure she thought I had lost my marbles
too. I sputtered out something to the effect…I think we need to get to
the hospital…I think we got a heart.
I
quickly got myself ready and joined Susan at the hospital. As I walked
onto the ward and judging by the beaming smiles from the staff as I came into
Russell’s room. We were getting our heart. We tried to contain our
enthusiasm, as we were well aware that this was not a done deal. We would
not relax until Russell was in the recovery room with his newly donated heart.
We were on pins and needles. We had some paperwork to sign and a few
issues required some explaining. The news travelled quickly through the
hospital and we began seeing visitors; staff who had come to know us throughout
our stay. They seemed even happier than we were.
One
of our cardiologists went through a basic game plan with us. The OR was
booked for later that day. The extraction team would be leaving Edmonton
in the next hour. She assured us that she had reviewed the file on the
donor heart and she assured us this was a “good – strong – heart.” That’s
when it sank in. All of the pieces were falling into place, but as we
spoke somewhere a baby probably not much different in age from Russell was
still alive and their heart was beating. Life support would be turned off
and the harvesting of organs would begin. This was when organ donation
and transplant became a reality. We knew what had to happen…we had
thought about it a lot. Now, it was quite different in reality.
Somewhere a family was saying goodbye and their loss would become our
gain. During our stay in Edmonton we had seen several children pass
away. We had seen what the families had gone through. This is why
this day was so difficult. We had tremendous highs and also some tremendous
lows as we thought of what our donor family must have been going through.
The other realization we had during that amazing day was that two beds down
from Russell as another little boy who was the same age as Russell was also
waiting for a heart. That family had to watch us celebrate and do high
fives, and today would not be "their" day. We knew that
feeling. We had been there only a few days before.
The
hours passed during that day. Shortly after 5…with two file boxes
containing Russell’s chart we packed up our boy and headed to the OR.
Russell did not go on a stretcher but he went in my arms. We walked
together knowing that he went into that operation in great health thanks to his
Berlin Heart and the stellar care he received. He went into that OR
figuratively with his “Boots On.” Susan and I brought Russell into the
operating room where the surgical team was waiting. We laid him on the
operating table and said words of encouragement for our little boy. At
this point I was so proud of my son. Toughest little kid I know.
We
said our goodbyes and walked out of the room. We had our pager which
would summon us when the surgery was over. Another peculiarity of this
surgery was that it began before the donor heart arrived in Edmonton.
There was a significant amount of prep to be done and under ideal circumstances
the heart would arrive only when it was ready to go in. Remember, we
still had a Berlin Heart to remove.
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| Russell on Cardiac Row after his transplant Stollery PICU - January 1, 2009 |
Russell’s
surgery began about 6PM…we didn’t expect to hear anything until the early hours
of the morning. We went out for supper and tried to distract ourselves
during that evening. Our pager began to buzz shortly after
midnight. It was over. We headed over to the hospital; back to the
familiar confines of the PICU. We met our surgeon outside of the
PICU. He began to explain that things went well but there were a few
hiccups. When the heart was implanted it did not start to beat exactly
the way they would have liked. He described it as being “stunned.”
He cautioned us that the next few hours could be very tense. This is not
the news we wanted to hear. We had the transplant! The drama was
supposed to be over. We walked into PICU to see our little Russell.
He was wired with every tube imaginable. At this point this was not a
foreign sight to use. The monitors and the tubes did not phase us.
How was he?
In
our experience, we had learned to rely on our bedside nurse to gauge how
Russell was doing. We talked to one of the PICU Docs and she told us to
prepare for a rough night. Great…more drama! The Doctor’s typically give
you the “politically correct;’ well thought out response. If we really wanted
to know what was going on we would talk to the nurses. When we saw
Russell and talked to our nurse I think we felt a little less tense. They
were prepared for the worst but they also gave us a lot of confidence. We
got the “been there…done that” attitude. We spent a few hours with
Russell then went back to the hotel to try to get some sleep. We came
back to the hospital the next morning and Russell was basically
unchanged. This was good news as the longer things were stable the more
opportunity Russell had time to heal and for his new heart to strengthen.
After cardiac surgeries it is common for kids to be on a pacemaker. After
the heart has been manipulated it takes time for the heart to recover and the
signals which make the heart beat return to normal. This is definitely
the case for a transplant. So Russell’s heart was beating at a very
steady and methodical pace, because of the pacemaker. That afternoon,
something strange happened. Russell’s heart rate started to
increase. That shouldn’t happen with a pacemaker. This certainly
got everyone’s attention. It freaked us out (we’re parents - we’re allowed
to freak out). After some discussions and some consultation it was
explained to us that the heart was trying to take over. Which is good;
but it certainly wasn’t ready to do it alone. The decision was made to
try to slow the heart down. A cooling pad would be placed under Russell
and his body would be cooled. Cooling would slow his whole body down
including his heart until his heart was slowed to a more manageable pace.
This process scared us a little as we were so “done” with drama like
this. The cooling took place and it had the desired effect. Over
the next few hours we could see the irregular heartbeats slowly go away.
Even an untrained person as me could see the heart improve its rhythm. We
could breathe again….as Russell’s heart beat became more consistent our stress
also went away.
The
next couple of days went by without any incident. Things were going the
right way and they were getting ready to send us to the ward. The big
change for us from the moment we received the call about the donor heart was
that now we had an end date. Yes, we knew we would have to stay in
Edmonton for some follow-up but now that we had the transplant we now knew what
that timeline looked like. Until that point, we never knew when we would
be returning home. When we left for Edmonton back in October we were
leaving with no return date. Now that the transplant had happened we
could start making plans to return home. We could start making
plans. Transplants in infants have changed a lot over the past few
years. There is a lot more experience now with these kids. We were
now getting hints from our Doctors that they wanted to send us home
early. Russell recovered well and was improving all the time.
January went by with only some post op issues, but we were managing
those. They discharged us from hospital on Feb 17. We then had the
new experience of caring for Russell in our hotel room. Finally, we were
scheduled for our first heart catheterization. This would be the acid
test of how Russell’s new heart was doing. When that was done; we
were heading home. The heart cath was done in early March and Russell and
Susan flew home to Winnipeg on March 6th 2009. Our 6
month odyssey was over.
Post-transplant
life for Russell has been interesting to say the least. We now have no
worries about cardiac issues. Russell now goes through routine follow-up
as part of his transplant. The medications he is on to manage rejection;
compromise his immune system. This results is a lot of added stress to
parents who worry about all of the “nasty” things that he will put in his mouth
as kids tend to do. We also worry about all of the bugs that seem to
plague kids as they grow up, go to daycare, and attend school. Russell
also has to contend with the effects of his rocky road to get his transplant.
The extreme measures that were taken to save his life did not leave him
unscathed. He has issues that we are working through to this day.
He was tube fed for almost a year after his transplant and has struggled with
eating issues ever since. He still has challenges and hurdles to
overcome; but he is a fighter. This spring he participated in youth
soccer. He participated the way any child would. You could never
have picked him out of the crowd as a child who had been through the challenges
he has endured much less a heart transplant. To many who know us they
refer to him as the “miracle” we just think of him as Russell.
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| Can you spot the transplant kid in this picture? |
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| Nicole and Russell: It may be a bit of a cliche but everyday we are together is a celebration. |
Thanks for this great blog, Very well & insightful.
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