Big News about Hannah’s Heart

I used to write all the time – on Post It notes at work, on Dunkin Donuts receipts in my car, I’d send myself emails if I didn’t have a pen and paper. There were so many thoughts I wanted to remember ever and feelings that I wanted to release. Lately I haven’t even been able to write a grocery list and it all started after Hannah’s last cardiology appointment. The month we waited for her sedated echo somehow flew by in the most painfully slow way. The days were short and the weeks were long but it was finally 6 am on a Thursday morning and time to leave for the hospital.

The appointment went surprisingly well, all because Hannah is the greatest kid ever. Even though she hadn’t eaten in over 12 hours she was still happy and silly while ninja rolling across the adult-size bed. After we sorted out which sedation medication to use (the doctor let us choose) and Hannah fell asleep (in 3 minutes instead of the typical 20-30 minutes) the echo took place and lasted over an hour. Our cardiologist was on vacation but another one came in to check the images and give us zero information on what she saw. The anesthesiologist and nurse were expecting Hannah to be awake by then but it was at least another 15-20 minutes before she started to open her eyes. Once the nurse finally believed us that Hannah wasn’t going to drink apple juice we were allowed to give her a small bottle before being discharged.

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Our cardiologist called early Tuesday morning to give us her report: accelerated blood flow, moderate blockage of the valve, but no damage to the valve. She felt surgery was not urgent and could be done at our “convenience” but she wanted to prevent Hannah’s case to the cardiothoracic team at the end of the week to see if anyone disagreed. Friday afternoon rolled around and we were given the best news ever…

Hannah doesn’t need surgery yet or possibly ever.

She’ll be monitored every 6 months to see if the scar tissue continues to grow or if the accelerated blood flow damages the valve. Hannah has no idea why she was hugged so tightly that day but the rest of us immediately felt relief from the anxiety.

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Hannah’s Heart Defect

The first anniversary of Hannah’s heart surgery is approaching so I’ve been pushing myself to finish posts that I’ve been working on for months. I’m hoping to have them all done by June 12, to be forever known as Hannah’s Heart Day.


The nurses and doctors knew something was wrong right after Hannah’s birth. It clearly wasn’t serious enough for them to take her from us immediately because they still cleaned her up and let Pete hold her before whisking her off to the nursery. The issue was her low oxygen level – something they couldn’t accurately diagnosis at that hospital. The pediatrician told us it could be a lung or heart issue. That was the only warning we had that our little girl could have a heart defect, and I remember the exact moment when the warning become reality.

Hannah had been taken to the children’s hospital, I sent Pete and my parents home, and I was alone in my hospital room when my cell phone rang. It was the doctor that accompanied Hannah on her ambulance trip, a pretty Indian woman who I thought seemed much too young to be a doctor already. She said “We confirmed your daughter has a heart defect. We will have more information tomorrow. Also, she’s hungry. Do we have your permission to give her formula?” It all felt like a dream.

It was nearly 36 hours before we sat down with the cardiologist to learn more about the defect. According to Boston Children’s Hospital, an AV canal defect occurs in 2 out of 10,000 births (0.02%). However, 50% of babies with Down syndrome are born with a heart defect, about 20% of which have an AV canal defect.

The doctor explained that even though Hannah’s heart defect was considered congestive heart failure, she wasn’t a “blue baby” or at risk of going into sudden heart failure. Her symptoms would worsen over time and we’d see the pediatrician or cardiologist every two weeks, who would help monitor Hannah’s progress. Visiting nurses would come twice a week for weight checks and medication would be needed to delay the inevitable surgery.

These were the main symptoms that Hannah experienced:

Fatigue – As a newborn, Hannah could easily sleep for 5-6 hours between feedings. Once she became more active and hungry during the day, she stopped waking up a night to eat. Unfortunately, Hannah never learned how to soothe herself to sleep because she’d just pass out wherever she was.

Tiring while feeding – This was our main struggle. Hannah often fell asleep mid-feeding because the simple act of taking in calories exhausted her. She eventually quit breastfeeding because it was too much work. During the two weeks before her surgery it became more difficult to get her to finish a bottle.

Poor weight gain – According to the nutritionist, infants gain about 20-30 grams a day but Hannah was averaging 10. She was burning most of her calories on breathing, eating, and growing lengthwise. We started fortifying breast milk with formula once Hannah was more active and gradually increased the amount every month. By the time surgery was scheduled, the milk was so thick from formula that it looked like a milkshake.

Sweating – Memorial Weekend was the start of the sweating, which was the cue to us that she wasn’t doing well. I remember one day she was sleeping in my lap and my pants were soaked through from her sweat.

Other symptoms – Rapid, heavy breathing; rapid heart rate; cool, pale skin

Hannah started the two medications within two weeks of leaving the hospital. The first was fuorosomide, a diuretic, that pulled excess fluid out of Hannah’s body and lungs, which helped her breathe easier. The second one, Captopril, treats high blood pressure and heart failure. For Hannah, it allowed more blood to flow through the aorta which lessened the extra blood flow to the lungs. The dosages were increased every few weeks as she slowly gained weight and needed more assistance to stay comfortable.

The truly amazing part of the whole ordeal is that you never would have guessed, just by looking at her, that Hannah was sick. Nearly every day of those 3 1/2 months she was a happy, curious, funny little lady.

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Six days before surgery

31 for 21: H is for Heart

The stories of Hannah living with her heart defect and the surgery itself are better left for a day when I can give them the time they deserve.

Instead I’m sharing some of the moments that stand out the most from the surgery…

I refused to carry Hannah into the hospital in the car seat because I wanted to hold her for as long as I could.

During pre-op we had to change her out of her jammies and into a kid sized hospital shirt that was way too big for her. She’d never looked so small and innocent before, just staring intensely at her hand.

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A female anesthesiologist assistant was sent to us to take Hannah, as if handing my baby over to a woman would make it easier. Hannah was sound asleep when I gave her to this stranger.

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As we walked out of pre-op my only thought was “what if that’s the last time I see Hannah awake?” 

Watching Hannah wake up from sedation might be the worst moment of my life. She was silently screaming, her face filled with terror and panic as she fought against the arm restraints. The nurse called for help because the situation was becoming an emergency. It was like a scene from a television medical drama when doctors and nurses rush into the room.

Hannah wore a pink bow and booties every day.

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She smiled at every single person who looked at her. Even during 2 am chest PT and vitals.

After only 6 nights we got to take her home.

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