HELLO, NORAH.

THOUGH SHE BE BUT LITTLE, SHE IS FIERCE.

#7 // Olympic Medals

Our StoryJoanna ZuidemaComment

Our consult with a pediatric cardiologist was the day after our initial visit at MNPP. Because of the last minute scheduling, Lane was unable to get off of work for this one, so I was headed to the appointment alone. Thanks to our recent track record of stressful appointments, I was afraid to go alone and Lane was afraid of not being there.

This appointment involved another hour-long ultrasound, but focused specifically on Norah's heart. She was her usual, active self and was having fun toying with the sonographers. Norah would play with covering up her heart with her arm, forcing the sonographers have me roll from side to side multiple times to get her to move to the correct spot (this is no small task when you're pregnant, by the way) . Once they finally had a good shot of her heart, Norah got the hiccups, so that crystal clear image was now rhythmically bouncing. Little stinker ;) 

The cardiologist, Dr. R, came in part way through the ultrasound. He had been reviewing the ultrasound as it was recording, but wanted to work directly with the sonographers. 

As I lay there, looking at this grey blur on the screen in front of me, the three medical staff worked the ultrasound wand – flinging a ton of medical jargon back and forth as they chatted. They may as well have been speaking a different language.

Speaking of – Dr. R is Spanish. With the combination of his accent and incredible bedside manner, I was secretly hoping he could be the one to deliver all of our medical updates.

I had my fingers crossed that their little medical conference translated to, "Why are we looking at this perfectly healthy heart?" But, that was, unsurprisingly, not the case.

We had our first solid diagnosis. Norah has Tetralogy of Fallot.

The difference between a normal heart and a heart with ToF. Image from an   overview of ToF by Boston Children's Hospital.

The difference between a normal heart and a heart with ToF. Image from an overview of ToF by Boston Children's Hospital.

My nonprofessional summary: With ToF, the wall between the ventricles of Norah's heart is not fully formed. This causes the right ventricle and aorta to overcompensate, and the pulmonary artery to be pinched. This also means that oxygenated and non-oxygenated blood mix and gets sent back out to the body, causing her to appear more blue - especially at birth.

Norah's heart will likely not need any intervention at birth. She will require an open heart surgery at around 6 months of age to close the hole in the wall between the ventricles and to open up the pulmonary artery. She may need a second surgery as a young adult to adjust the fully grown heart. But outside of that, she should be good to go.

The prognosis for kids with ToF is extremely good. Dr. R said ToF is one of the most common heart defects he sees. In fact, Shawn White has ToF and is winning olympic medals so, "we expect your daughter to do the same."

Dr. R just wanted one follow up appointment before birth to make sure nothing new develops. He saw no reason to worry about Norah's ability to handle the rest of the pregnancy or birth with ToF.

Doctor sketches, notes, and handouts – the first of many we'd receive.

Doctor sketches, notes, and handouts – the first of many we'd receive.

Norah's heart condition now necessitates that I deliver at Abbott. The Children's Hospital (connected to the Mother Baby Center in Abbott) in Minneapolis has more specific pediatric cardiac capabilities in their Level IV NICU vs the level III NICU of the St. Paul campus.

Even with knowing that Norah's story may be a little different with all of her other concerns, I still felt really positive leaving this appointment. Maybe it was the accent. Maybe it was because I wasn't being told a laundry list of ambiguous abnormalities this time. 

Maybe it was just having something definitive to hold on to for once.

 

Continue the story > #8 // Genetic Counseling