‘The next 4 weeks were hell’: Mom’s harrowing account of her 4-year-old’s THREE open heart surgeries

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“My son Hudson has Hypoplastic left heart syndrome (HLHS).

After having the typical pregnancy and birthing experience (doctors and hospitals) with our first born, Jensen, we decided to do things a bit different and more on my terms, so we hired a mid-wife and doula. We planned to only have one ultrasound at 20 weeks just to make sure everything was all good and on track with the wee one. The appointment started out like every other ultrasound I had been to, full of excitement to hear our babe’s heartbeat, a regular screening — until the end, when the lady told me I would need to book a follow up appointment because she couldn’t see the left side of the heart due to the position of the baby. Looking back, I think she was just trying to not worry us.

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We booked another ultrasound for the following week at the major ultrasound clinic in town and within the first five minutes the tech asked why we weren’t sent to the high-risk clinic in Calgary (about an hour south of Red Deer). I asked why and she said she had to go get a doctor. After painfully waiting for 10 minutes, a doctor came in and told us that our baby’s left side of his heart looked as if it was not going in relation to the right and that we needed to go to Calgary for a more extensive ultrasound with better equipment. That was difficult to hear but I was convinced at that point that they would tell us that it was just a mistake, and everything was fine.

The next 4 weeks were hell.

We traveled every Wednesday to Calgary for ultrasound after ultrasound (so much for only wanting one) to track Hudson’s progress. The first four appointments were ALL bad news.

Each time was something different. Confirmation that yes, the left side of his heart was too small, and he did indeed have Hypoplastic left heart syndrome. Next time, it was that he had no echogenic bowel, but now had a plural effusion (water around his lungs). Then it was that the plural effusion had doubled on the left, so we might have to fly to Toronto to have a shunt put in to alleviate that fluid. And the worst one: it looked like he might have Trisomy 18 and they would not do any invasive procedures (i.e. heart surgery) because he would only survive for up to two weeks.

I don’t remember what she said after that.

I was done. I was defeated. I needed to get my mind off everything and the only way I knew how was through photography. I have been a professional family photographer since 2010 and diving into work was the only thing that saved me. It gave me an escape, something to look forward to when we were finally able to bring our boy home from the hospital, even though he had not even been born yet.

I went into to every ultrasound with a positive attitude in hopes to hear good news, but was kicked down every time.

…Until Feb 23… week 31 of my pregnancy

This time I went in prepared for the worst. We sullenly walked into our tech’s room and I laid down on the table for the fifth time. The tech came in and was super nice, but I was so down that my normally peppy self was only able to muster a tiny smile… until she said, ‘So, last time they had concerns about a plural effusion,’ I said yes, and knew right then, good news was coming… ‘That’s strange because I don’t see anything right now, just a tiny little pocket by the left lung.’

We cried, all the happy tears. It felt like the world and just been lifted from my shoulders.

From there we still did our regular weekly ultrasounds and nothing new popped up which was great, but we still had to face the fact that our little Huds would be having surgery as soon as he was born (we were told to expect it within a 4 to 10 days of birth). We did a tour of the hospital and all was well until when we went into the NICU with all the newborns that were recovering or were just transported. It was that exact moment when it all sunk in.

I looked at my husband Lucas and I knew he was experiencing the exact same thing. It was really hard to hold my composure. I knew at that moment this wasn’t just a story I was telling people — I actually had to do this. I’m going to fast forward a bit for a second to when WE were in the NICU and saw a couple walk in doing the exact same tour we did. I looked at Lucas and said, ‘I just want to hug them and tell them they will get through it. They don’t know it yet, and it all looks so scary, but they will. It will be ok.’

We had to relocate to Edmonton (an hour north) when I was 37 weeks in order to make sure Hudson was born close to the Stollery Children’s Hospital where he was to have his surgery. We settled into the Ronald McDonald House Northern Alberta and were welcomed with open arms. I just loved that place.

Ten days into our stay, we welcomed our sweet baby Hudson into the world. I was really nervous about his birth because he was breech and if I was to have a C-section, I would be recovering in a completely different hospital while Hudson would be at The Stollery Children’s Hospital.

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With that in mind, I knew that there were some doctors that would not do a natural breech birth, and some that would. It would just depend on who was on-call when I went into labor — talk about stressful. When we got to the hospital I was relieved to find that the doctor that was on-call did do natural breech birth, but it was short lived because he told me he was off in 20 minutes and the doctor relieving him was apprehensive. She came in and I straight up told her I was pushing him out and that was final. I’m a very shy person and I don’t like conflict, but I was very forward with my intentions and it worked.

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8:17 p.m. April 18, 2013

After 17 minutes of pushing in the OR room, my little breech baby Hudson arrived. He wasn’t breathing and was rushed away. After a few minutes, I heard him in the room next to me and I started crying. They wheeled me into his little room and I felt so much relief but anxiety all at the same time. He was going to be transferred to another hospital and I would have to wait to be discharged until I got to go there and see him.

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They got him ready in his little Stork transporter unit and brought him into our recovery room. I finally got to hold my son, but the moment they left was one of the worst parts. I spent the next 3.5 hours with anxiety knots in my stomach, just wanting to leave and be with my newborn son.

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I was discharged at midnight and got to spend the night in the NICU parent rooms, getting up every two hours to pump since I was unable to feed him at that point.

The doctors hummed and hawed on what to do with him as the echo they had done on him was much better than what they had seen when he was in utero. As the days went on you could see Hudson deteriorating and slowly went into heart failure. On day 12 he had an MRI and had a really bad reaction to the anesthetics (his heartbeat stayed upwards of 200 bpm for hours) so they transferred him to the PICU where he would have a nurse beside him 24/7. They set a date for the first of three surgeries and on, May 2, 2013, at two weeks old, Hudson was set for first case at 7 a.m.

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May 2013 – First surgery

We got up early and went straight to the hospital at 5:30 a.m. I just kept touching and tracing his perfect little chest not knowing what to expect when he got out of surgery. I kept trying to freeze time, just five more minutes… don’t take him yet. But it didn’t work and the anesthesiologist and Dr. Al Aklabi, Hudson’s surgeon, came in to talk to us about what his surgery was going to entail. The past few months were basically a crash course on the anatomy of the heart — I was pretty sure I was an expert by the end.

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I was able to carry Hudson down to the entrance of the operating area. I kissed him on the head and slowly handed him over to the anesthesiologist. I’ll never forget what he said, ‘Don’t worry, I’ll treat him as if he were my own,’ which actually comforted me. He walked away and through the double doors went my 2-week-old son. I just fell into Lucas and cried. I don’t think we moved for 10 minutes. I just stood there looking at the door.

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An excruciating 6.5 hours went by and I saw Dr. Al Aklabi walking towards us in the waiting room. I couldn’t read him which made me really scared, but he said everything went really well and he would be in the PICU in about 30 minutes. He was so swollen. It was hard to see him at first, but it got to a point where you just get used to it. As hard as that is to imagine, it just became part of our life. I remember when I was pregnant looking at photos and thinking to myself, how am I ever going to get through this? But when you’re there, something happens. You just do what you have to at that moment, and you DO get through it.

His chest was still open due to the swelling but was closed on day four. Slowly tubes and lines were pulled, pain meds were lowered to 0, and he was extubated on day 9.

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He recovered from his surgery remarkably — a testament to how strong and resilient these heart warriors are. The only issue he had was a chylothorax leak which meant he needed to be on a special low fat chain diet called Lipostart (which smells like burning plastic) for six weeks. I pumped every two hours to make sure my supply stayed up and froze what I had so we could have backup when he was able to feed from me again. A week after that we were discharged and I can’t even tell you how happy I was to take Hudson outside to breath fresh air for the first time.

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On May 29th, after 8 weeks in Edmonton, we got to bring our son home!

The next few months were an emotional roller coaster. We knew he would need another surgery around 4 to 6 months old, so all the while we had him with us at home, there was the looming fact that we had to go back soon. And on top of all of that, I suffered from PTSD from that experience, as well as postpartum depression. It was an intense year for our family to say the least.

Hudson was very fragile for those four months in between surgeries. We had to do assessments every day and had appointments in Edmonton every two weeks to track his progress. He was getting three different medications — I needed a written schedule to make sure he got what he needed and at the proper time.

On Aug 22, 2013 (4 months old), we went in for his scheduled MRI to see when he would be needing his second surgery. All went OK and the doctors said they would be in contact with us to set a date for that surgery. We packed up our stuff from the hotel and got on the highway back to Red Deer. About 15 minutes into the drive I looked at my phone and had about five missed calls and two messages from the cardiac unit. I called back and they told me they went over the MRI a bit more closely and needed us to come back right away. Hudson needed to have his surgery very soon. He was outgrowing the shunt that was put in his heart during the first surgery.

So back we went.

September 2013 – Second surgery

I spent 10 days with Hudson in the cardiac until Sept, 3, 2013, when his second surgery was set.

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This one went so much faster. His chest was closed after the surgery and he was extubated on day two. We were out of there in 10 days!

The Paper Deer Photography | thepaperdeer.ca
The Paper Deer Photography | thepaperdeer.ca

We spent the next four years with some kind of normalcy — Hudson did not have as much energy as his big brother and would get winded quite quickly, but we adventured as much as we could, even if we had to pack him everywhere.

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We traveled throughout the states, explored our Canadian Rockies almost every weekend and did as much normal stuff a small growing family does. He still had tantrums, went through terrible twos and the crazy three-nager stage. He was as normal as they come.

The Paper Deer Photography | thepaperdeer.ca
The Paper Deer Photography | thepaperdeer.ca
The Paper Deer Photography
The Paper Deer Photography | thepaperdeer.ca

December 2017 – Third and final surgery

In April of last year, we had our scheduled yearly follow up appointment. We knew his third surgery was upon us. They said he was ready and we agreed, and so the process began.

We got to enjoy our summer travelling throughout BC and Vancouver Island and in October he had his Diagnostic Cardiac Cath Procedure and they set a date of December 6th. I had heard the doctors say that parents always struggle with the last surgery because they start to lead a life where hospital visits are fewer and fewer, and then you are shoved back into it before you know it. That was definitely the case for us.

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They rescheduled his appointment a few times which was very difficult to deal with mentally, especially when you’re trying to prepare a 4-year-old for open heart surgery. Even on the day-of, they went back and forth four times on whether or not he would have surgery due to an ICU bed shortage. But he did end up going in at 3 p.m. on Dec 6.

The Paper Deer Photography | thepaperdeer.ca
The Paper Deer Photography | thepaperdeer.ca

He was such a warrior and hit every recovery marker during his 10-day stay at The Stollery. He did have some complications after surgery but those have now been resolved and we are working on mending ourselves and getting back to normal life.

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We have noticed some incredible changes in Hudson since his surgery a few short months ago; he has so much more energy, he has an insatiable zest for life and he wears that in his precious smile every day.

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These kids are so resilient and if you happen to currently be on this same path or about to embark on it, please know that there are amazing support groups for us heart families and you’re not alone.

The Paper Deer Photography | thepaperdeer.ca

Today Hudson is a happy, super goofy, energetic almost 5-year-old. I would do this all over again and again if it meant I got to have him.

The Paper Deer Photography | thepaperdeer.ca

I feel like with everything we went through and all that could have been, we really lucked out. Hudson did not have any chromosomal issues, and no other health worries as of now. We are incredibly grateful to all the staff and volunteers at the Stollery Children’s Hospital in Edmonton, Alberta.

The Paper Deer Photography | thepaperdeer.ca

Every year since 2014 we’ve hosted a fundraiser (Hudson Heart Project) at my husband’s tattoo shop (Classic Tattoo in Red Deer, Alberta) and donate 100% of the proceeds to the Stollery. We have an incredible community behind us and so far we have raised more than $150,000 and hope to make it $200,000 after our next event on June 3rd.

But most importantly, to my sweet Hudson: never lose your passionate nature or your goofy smile, continue being your fearless self and above all, be kind and compassionate to others. Rage on little dude, rage on!”

The Paper Deer Photography | thepaperdeer.ca

This story was submitted to Love What Matters by Jayme Ford, mother to Hudson and founder of The Paper Deer Photography in Red Deer, Alberta, Canada.  Submit your story here, and be sure to subscribe to our best love stories here.

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