Baby Milo's Medical Support Journey

UPDATE: Feb 11, 2022 Milo had his second surgery. Bilateral bidirectional Glenn. 

Hi, my name is Jennifer Gonzalez. My husband Jon and I found out we were expecting November 2020. After years of unexplained infertility, fertility treatments, injections and a miscarriage, we felt so blessed to finally welcome a baby into our family.

After my 20 week anatomy scan, I was told that they would like a repeat scan to look over a few things that they missed. The repeat scan had to wait a few weeks due to a military move and having to find a new doctor. I had a feeling something was wrong so the anxiety of having to wait weeks really took a toll on me. When we finally went in for our repeat scan the doctor came in and told us that we needed to go talk in his office. This is when we knew something was terribly wrong. In his office we were told that our son had Heterotaxy and Congenital heart defects (CHD).

Heterotaxy is a rare condition where many organs in the body can be formed abnormally, in the wrong position, or even missing. Many children with heterotaxy have complex heart defects, which are often the most challenging problems associated with heterotaxy.

Once we learned about our son's condition our entire lives changed. My pregnancy immediately became high risk. I had weekly appointments with specialist that consisted of Echos, NSTs and ultrasounds to closely monitor our son, his growth, and his heart. Jon and I tried our best to stay optimistic.

Fast Forward to July 31, 2021 our son was born at 1:03am via emergency c-section and taken directly into the NICU. We decided to name our son Milo and later found out that Milo means warrior or soldier, which seems very fitting.

Milo has a very unique anatomy and very special heart. We ourselves are still trying to learn about our special boy. He has been diagnosed with the following:

Midline Stomach, Malrotation, Renal hypoplasia (small right Kidney), Chromosome 22q11.2 duplication, Bronchial Stenosis (narrowing in the right bronchi), and most importantly congenital heart defects that include: Complex Single Ventricle, TAPVR, mixed to LSVC, AVSD as well as history of SVT (Tachycardia). Milo also has Asplenia (no spleen) so he is on antibiotics. Risk of infections, RSV, covid, or even common colds can be life-threatening.

Milo will need a series of open heart surgeries and procedures during the first few years of his life. His surgeries will be stepping stones to fixing his heart to its best potential. There is no cure or way to completely fix his heart or overall anatomy.

Jon is stationed about 1.5 hours away from Milo's cardiology team and the hospital located in Arizona. I have been traveling weekly to his appointments and also have been able to stay at the Ronald Mcdonald house during his hospitalizations.

September 21, 2021 Milo underwent his first open heart surgery at Rady Children's Hospital in San Diego. He is currently stable and recovering. We are taking it day by day. The extended period of time in the hospital has impacted us financially since I am unable to reopen my business in order to care for my son. We have been asked multiple times how we can be helped so we decided to open this gofundme page.

Please do not feel obligated to contribute; however, any donation would be greatly appreciated.

Donations will be used towards outstanding medical bills, medication copays, medical equipment, travel expenses such as gas, food, hospital parking, hotel, etc.

Please feel free to follow Milo's Journey on Instagram: https://instagram.com/milos_heterotaxy_journey