Jonah Paxton Lennox Jonah’s TOF Journey

First post: Oct 23, 2018 Latest post: Jun 5, 2019
On Tuesday, July 24th, Melissa had her weekly checkup with her midwife, Louise. She was 39 weeks pregnant, with 6 days to go until her due date. Through the "grace of God" or maybe the "luck of the Irish" ;-) Louise had decided to do a late third trimester scan to confirm the baby's growth was still on track. It was at this ultrasound that the tech noticed something “off” with the baby's heart. The left ventricle was not coming through with a good read. Louise was not too worried yet, but decided to order another scan with a Maternal Fetal Medical doctor in Falmouth. 

That Thursday morning, at the second late trimester scan with Dr. Tamara Takoudes, she also found that the baby's heart was not measuring correctly. Due to the fact that it was too far along and the baby was too big and positioned in a way that made it difficult to get a full read on his heart, she decided a fetal echocardiogram, in Boston, was necessary, as soon as possible.

Very early Friday morning Melissa & Phil made the trek up to Boston. The echo was done by Dr. Jami Levine. Though the measurement was not 100%, there was finally a diagnosis of some sort.

The baby had a 90% chance of having a congenital heart defect (CHD) known as Tetralogy of Fallot (TOF). Basically what this entails can be broken down into 4 parts. The heart has 4 chambers, Lower left ventricle, Lower right ventricle, Upper left atrium & Upper right atrium. A muscle in the center of the Lower Left & Right ventricles grew off center. This caused a hole (murmur) to form in between the two chambers which in turn causes the blood to mix between the two.  The aorta stems from the right ventricle and the pulmonary vein from the left. His aorta is enlarged to make up for the off-centered muscle and in turn his pulmonary valve is partially closed, which causes the heart’s pumping action to be overworked.

The good news was that baby boy was on the "good" end of the spectrum. About 10% get diagnosed at the worst end where surgery will be needed directly out of the womb or sometimes even in utero! The majority are diagnosed in the middle of the spectrum. Luckily, he was in the other 10%, at the best end of the spectrum. This meant that as long as his oxygen level could be maintained, and there wasn’t too much additional closure of the pulmonary valve after birth, the surgery could wait a couple of months, which gave him time to get stronger and gain some weight before operating.

Since birth, Jonah has met with his cardiologist, Dr. Emily Greenstein, every 2 weeks. He is steadily gaining weight, and his oxygen level is hovering at 90. Since there has been more closure to the valve, and his oxygen level has decreased, she felt it was time to schedule the surgery. Dr. Greenstein conferred with the surgical team, who agreed.  On Wednesday, October 24th, Dr. Luis Quinonez, will be performing Jonah’s open heart surgery at Boston Children’s Hospital.

The purpose of this page is to keep everyone updated on Jonah’s journey.  Feel free to leave messages, prayers, and positive thoughts, for Jonah, Melissa & Phil.

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