Beckham's Open Heart Surgery

Beckham was born in mid-August 2022 by an emergency c-section after over 87 hours of labor at our local BirthPlace. A Congenital Heart Defect (CHD) called Tetralogy of Fallot TOF (teh-TRAL-uh-jee of fuh-LOW) was detected during an anatomy ultrasound.

TOF is a rare condition caused by a combination of four heart defects. “These defects, which affect the structure of the heart, cause oxygen-poor blood to flow out of the heart and to the rest of the body. Infants and children with tetralogy of Fallot usually have blue-tinged skin because their blood doesn't carry enough oxygen. All babies who have Tetralogy of Fallot need corrective surgery. People with Tetralogy of Fallot need regular doctor's checkups for the rest of their life and may have activity restrictions.”

More about TOF: https://www.mottchildren.org/conditions-treatments/ped-heart/conditions/tetralogy-fallot

Beckham had Open Heart Surgery on 1/12/23 at the Congenital Heart Center at the University of Michigan C.S. Mott Children’s Hospital. As a solo mama and care provider, I have been on unpaid Leave of Absence (LOA) and/or Family Medical Leave (FML) with Beckham for the majority of the last 5 months and will continue through the duration of his hospital stay and care at home following his release.

Beckham has had consistent care provided by an exceptional team of doctors. With a failure to thrive, the goal was to have him grow and gain as much weight as possible before completing the Open Heart Surgery. On the growth chart, he is consistently in the 1st percentile. He has received all of his routine vaccinations through his 4-month checkup and is meeting milestones as expected. He takes medication 2x per day to reduce fluid in his body caused by his heart condition. He also qualified for and is receiving the SYNAGIS shot, which is for babies that are at higher risk for severe Respiratory Syncytial Virus (RSV). It is a series of 6 monthly shots throughout the RSV season (November-April). Each shot (not a vaccination) is nearly $10,000, and only a portion is covered by health insurance.

I created this GoFundMe to help alleviate the long-term effects of this hardship and to allow me to focus on Beckham while catching up on living, medical and other expenses. I have spent countless hours meeting with several Social Workers and seeking out resources to get us by in this difficult time, resulting in primarily dead ends (as I am employed they do not take into consideration lack of pay (LOA, FML, etc.)

I am beyond grateful for the resources that do prove beneficial, including your kindhearted contributions. Every bit helps and will not go unnoticed or taken for granted. We would love to read your kind words of encouragement and personal stories as well.

Due to Beckham's immature immune system and being medically fragile in heart failure, we have not ventured out much nor had many visitors.

He began attending an in-home daycare at 8 weeks old when I returned to work (following 9 weeks of maternity leave - 1 week in the hospital before giving birth).

At 11 weeks old he was diagnosed with (RSV). With the "tridemic" (RSV, Covid-19 & Flu) numbers overwhelming hospitals, his medical team was determined to keep him out of the hospital to reduce the risk of further exposure. This severe illness (RSV) lasted about 10 days with days 4&5 being the most intense. The cough lingered another week or so. His oxygen and heart rate were monitored 24/7.

Beckham did return to daycare after recovering from RSV. However, shortly after, there was a string of illnesses and exposure that threatened his well-being and closed the daycare for a few days here and there. I was encouraged by his medical team to keep him out of daycare for the time being. With the "tridemic" not slowing down and the holiday season upon us, it was reiterated to continue to keep him in a "bubble" until after surgery and recovery.

At just 5 months old Beckham has already sacrificed many "first" experiences including Halloween, Thanksgiving and Christmas with friends/family and even meeting Santa Claus. Protecting him now will ensure he has many more years to spend time with family & friends and make a million more memories. We are especially looking forward to celebrating his 1st heartiversary this time next year! Until then we will #gowiththefallot

Here is a glimpse from others (whom you may be familiar with) that have been impacted by TOF:

https://www.youtube.com/watch?v=MmWWoMcGmo0&t=99s Jimmy Kimmel

https://www.youtube.com/watch?v=9ffKBhMacLo&t=6s Shaun White

In the days to come, I will share more about his heart journey.

Thank you for holding space for us and taking the time to read our story and being an invaluable part of this journey.

#BabyB #NewYearNewMe

#CHD #CHDawareness #TOF

#heartwarrior #hearthero

#gowiththefallot #zipperclub

#heartmama #boymom