When Maxwell was born, right away they told us he had a heart murmur. After a couple episodes of low oxygen, further testing was needed. Not even 12 hours old and Max was having an ultrasound of his heart, X-rays and an EKG done. Chase and I were in complete shock after the Pediatrician diagnosed him with Tetralogy Of Fallot and told us that our son has a hole in his heart. This was the most devastating news we’ve ever heard.
Having Type 1 diabetes, I had many ultrasounds throughout my pregnancy and unfortunately this was never diagnosed on any of them.
At 1:00am Max was taken down to MercyOne in Des Moines by ambulance to the NICU where he got more extensive care and to see a Cardiologist. After spending 3 nights down in Des Moines, he was discharged and we were headed home.
Unfortunately, this is a condition that affects 5 in every 10,000 babies and he will need to have open heart surgery at the end of January.
Tetralogy of Fallot (TOF) is a heart condition made up of four heart defects.
1 Ventricular septal defect (VSD): There is a hole between the right and left pumping chambers (ventricles) of the heart.
2 Right ventricular outflow tract obstruction: Because of a narrowed, underdeveloped artery connecting the right ventricle to the lung, not enough blood will flow from the heart to the lungs. This is what causes babies to be blue.
3 Overriding aorta: The artery that connects the heart’s left ventricle to body circulation is abnormally positioned directly over the VSD.
4 Right ventricular hypertrophy: The right ventricle is thicker than normal, because it’s pumping against the narrow blood flow. It’s working too hard.
The restricted blood flow to the lungs caused by TOF normally worsens with time.
Since his oxygen stats are lower, this causes a blue tint around his eyes and lips. TOF also causes poor weight gain due to excessive sleeping and extra work required to eat. This causes cluster feeding and 12 feedings a day to get him the calories he needs to grow. The doctors would like him to get older and gain some weight before he has surgery.
When he does have surgery, at least one of us will be out of work for quite some time. We’ll both be out for the week of surgery. Beyond that, one or both of us will continue to be out to care for him at home during recovery. Max has been a real trooper up to this point but it’s impossible to say how long or how hard his recovery will be.
We typically aren’t people that reach out for help but with these uncertainties, Chase and I appreciate all your support and kindness. #teamMaxwell