Amelia's Heart

On Tuesday, I posted a picture of Amelia recovering from the general anesthesia she had been administered so that she could undergo a cardiac MRI on Facebook.  The outpouring of concern and sympathy was incredible, and much appreciated.  After responding to a number of emails and phone calls, I decided it made sense to (finally!) finish setting up the blog that I began months ago so that I had a place to post updates. 

So this is the story of Amelia's heart.

It's a long story. 

At Amelia's four-year well-child check-up in August, her pediatrician heard a murmur and wrote us a referral to a cardiologist.  We weren't too concerned about it because heart murmurs are not uncommon in kids.  Plus, I have a VSD (or had one — it couldn't be located recently), and so I know first-hand that they generally don't have much impact on life.  In fact, the only thing that I can ever remember having to do for mine was take handfuls of antibiotics before and after dentist appointments (to prevent infection in the heart), and they don't even have you do that anymore (because way more people had adverse reactions to the antibiotics than developed infections in the heart)!  So, as a result, we didn't follow up right away with the cardiologist.

At the same check-up, though, Amelia's pediatrician also noticed that her tonsils were pretty enlarged.  The rapid strep test came back negative, but she had a course of antibiotics anyway.  When her tonsils stayed swollen, though, and actually got worse, we got a referral to an ENT.  He said to wait and see what happened with them, and scheduled a follow-up appointment for her.  He also said that, before we could talk about removing Amelia's tonsils, we needed to get her murmur checked out, and so we decided to follow up with the cardiologist ASAP in case her tonsils needed to be removed.

At her cardio appointment (in mid-October), Amelia underwent an EKG and an echo, in which they noticed some dilation (meaning enlargement, but not permanent) on the right side of her heart.  Amelia's cardiologist told us that she likely had either a sinus venosus atrial septal defect (ASD) and/or a partially anomalous pulmonary venous connection, and that surgery would be necessary to correct it.  Because they needed to get a clearer picture of Amelia's heart, though, they scheduled her for an MRI, which took place on Tuesday.  Overall, the MRI went well (aside from lots of tears caused by the general anesthesia).  They got good pictures and can see exactly where the defects are and how big they are.  She actually has both a sinus venosus ASD (basically, a hole where the vena cava and one of the pulmonary veins connect) and a partially anomalous pulmonary venous connection (meaning a pulmonary vein is draining partially into the right side of her heart instead of the left).  If not repaired, it will cause permanent damage to both her heart and her lungs.  So she has to have surgery to repair the hole and to reroute the anomalous vein.

Yep, open heart surgery.  On a four-year-old.  MY four-year-old.  It makes me want to cry.  And, in fact, has made me cry quite a bit over the past month!

BUT, we are very lucky that they found it now.   Lucky that our pediatrician even heard the murmur, which the cardiologist described as "unremarkable," and which one of the doctors who checked her out in the PICU after her MRI couldn't hear (God bless Dr. Murphy!).  Lucky that her tonsils are enlarged for some unknown reason, causing us to follow up on the cardiology referral sooner than we otherwise would have.  Lucky that we live in Boston, home to some of the best hospitals in the country, and, in fact, the number one ranked hospital for pediatric cardiology and cardiac surgery.

We should hear back from the cardiologist and/or a cardiac surgeon later this week or next week to discuss the next steps, but we know a little about the surgical process already. She will be in the hospital for 5 to 7 days after the surgery.  The cardiologist said that by the third or fourth day, most kids' pain is managed with tylenol.  Crazy, right?  A week after she is discharged, she'll have a follow-up appointment.  At that appointment, if she's feeling good, she could be cleared to go back to school.  I am amazed that kids can recover from open heart surgery in two weeks.  Anywhere between two and five weeks is standard.  There will be more follow-up appointments, obviously, and it'll always be something we need to watch, but it's very likely that Amelia will suffer no side effects.  Thankful for that.

Oh, and those pesky tonsils? They're scheduled to be removed the Tuesday after Thanksgiving.

Amelia recovering in the PICU after her MRI on Tuesday