Jax's Story: Parent's Letter Project Tetralogy of fallot

I know this is a scary time for you. People are telling you that their nephew or their best friend's child was born with a hole in his or her heart and that your baby will be fine—that maybe even his hole will close by itself just like the other baby's did. And it's frustrating. This is different and bigger and it's not going to fix itself, no matter what happened to those other kids. But it's okay: you have Children's National Health System.

I was told I was having twins in February 2011, and because of my "advanced maternal age" (36 years old) I was encouraged to have an amniocentesis. The results of the test showed that Baby B was perfect. Baby A, however, had a chromosomal anomaly, and a follow up anatomical ultrasound showed that he had a significant problem with his heart. My OB/GYN referred me to Children's National Health System's Division of Cardiology where he was diagnosed with tetralogy of fallot with pulmonary stenosis. For the rest of my pregnancy, Susan Cummings, MD, social workers, Laelia and Caroline, and the team kept close watch over us with echocardiograms every other week. His condition did not worsen, so I was able to continue to plan to deliver at my hospital rather than at Children's National.

Our babies were born at week 36. Baby A, Johannes "Jax," was 4 pounds 10 ounces and Baby B, Martin, was 6 pounds 11 ounces. Although he spent some time in the Neonatal Intensive Care Unit (NICU), Jax was discharged at three weeks. We had regular appointments with Dr. Cummings and monitored his oxygen levels weekly to make certain that they didn't drop below 75 percent. Finally, when he was a little over 3-months-old, Jax was ready for surgery.

The days prior to surgery included a request for "donor directed" blood. We had not anticipated this request, and our immediate family was unable to give blood—bad timing. The donations needed to be made on the Thursday or Friday before Tuesday's surgery—very specific timing so the blood can be tested and prepared in time for surgery. I sent out an email to my friends, posted a request on the www.CaringBridge.com site that I started a month earlier, and then posted my request on Facebook. In mere moments, my friends and their friends and kind strangers responded, promising to make appointments. I was so humbled and felt so supported by the outpouring of love for this little boy as they filled every available appointment time for two days. I urge you not to underestimate your friends; they will come through for you and your child.

Our pre-operative day was very long-- and yours will be, too. Our day began at 6 a.m. and lasted until 2 p.m. or so. Katie, the cardiac nurse practitioner assigned to us, did a great job of preparing us for what was to come, escorting us through the process, getting us through the tests and scans, blood draws, echocardiograms, vital statistics, and reviewing the surgery process with our cardiac anesthesiologist and with our surgeon, Richard Jonas, MD. Jax was perfect, quietly letting us carry him around the hospital, appropriately complaining when his blood was drawn, crankily reminding me that it was time to eat, and adorably sleeping during his meetings. We got the go-ahead for his surgery and the time was set.

Jax was admitted (on paper, at least) around 6 a.m. on Tuesday, November 22, 2011. At 7 a.m. we were escorted back to the examining room and in no time, the cardiac anesthesiologist explained what we could expect, what Jax would be experiencing, and whisked our little fighter off (after kisses, of course). Michelle, the concierge brought us a beeper so we would have constant updates, and then we were free to wander aimlessly through the (huge) hospital. As my husband and mother were able to give blood (finally), we chose to wait in the Blood Donor Center as they donated platelets. It was a nice, quiet place to wait, and it felt good to be able to pay forward the good deeds our friends did for us. But the time flew by and by noon I got a text telling me that he was out of surgery and that we would be able to see him in an hour or so. Dr. Jonas met with us again and told us that Jax's heart had greater deficits than was originally anticipated, but that repairing them was no problem and that Jax should have no problem recovering. We were quickly able to see him in recovery, and I got to kiss his little knee.

Although our nurse practitioner, social workers and the rest of the cardiac team prepared us well for surgery and recovery, seeing my little baby with all of the tubes and wires, bandages and stitches was much more difficult than I anticipated. He was swollen. He was lying, splayed and naked but for a diaper and the bandages, with his eyes barely opened. It was shocking. The nurses were amazing and so supportive and caring through every day we were in the unit. And it seemed that every hour came with improvements, a stronger cry, early extubation, amazingly high oxygen saturation levels, removing of the chest tube, being able to cuddle him, much wider and more aware eyes, watching him actually track a mobile over his head (before surgery, he was not particularly responsive). There were some setbacks—a fever and congestion related to the chest tube, but after a week in the Cardiac Intensive Care Unit (Cardiac ICU) and three days in the step down unit, Jax was discharged!

We had the benefit of an early diagnosis and the referral to Children's National Health System from a doctor we trusted. We researched extensively Jax's diagnosis and talked to his team frequently. We had an amazing surgeon. Our nurses were incredibly supportive and caring -- particularly Rachel and Megan . And, save for some minor parental inconveniences (try not to schedule recovery over a holiday!), we couldn't be more pleased with the entire experience. This "tet repair" was major surgery, and every person we came in contact with—every single one—made the process as easy as possible for us, gave us information, included us in the discussions and answered questions, encouraged us and, most importantly, gave our child excellent care. We couldn't be more pleased with Children's National Health System's Heart Institute.

Jax’s mom, Robyn

Treatment Team

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