Baby G’s Benefit

GoFundMe: Genesis Woods
IG: @ _BabyG21

 

Genesis was born April 28, 2021 and has been nothing short of a pure miracle. However, the journey of bringing him into this world and keeping him here was terrifying and trying. I went in for a routine checkup and the ultrasound showed there was a mass. I was sent to a specialist and the result was that the mass was indeed a tumor, but the specialist couldn’t tell if the mass was growing from his neck or his mouth. I was scheduled to go back in a week to follow up and that ultrasound reflected that the mass had grown significantly. At this time, there was no confirmation in if the mass was benign or malignant. I was then informed that baby Genesis, my first child, would possibly not make it after carrying him for 7 months. But I didn’t give up and neither did my doctors. I was scheduled for another ultrasound and MRI with fetal care specialist Dr. Crumbleholme, and those results confirmed the mass on baby Genesis was benign and growing from the top palette in his mouth. He had a tumor called Epignatus Teratoma which was a 1 in a million rare diagnosis. Dr. C reassured me that he knew what he was doing and had handled several other cases of the same issues. I ended up having weekly visits to monitor the growing tumor. At one appointment, they tested his breathing and learned he wasn’t breathing in his own because the tumor was blocking his airways via his nose and mouth. No mother wants to hear those words, specially during a global pandemic and you’re the only one allowed at these appointments. I was informed that I would have to have what’s called an EXIT Procedure to deliver my son. My next appointment was for April 28th to check his heart and status of the tumor. I also saw a cardiologist who informed me that his heart was good. I stood up to leave the room and my water ruptured from the growth of the tumor. I immediately instructed the cardiologist to contact Dr. C who stated we had to deliver immediately. I’m scared. I’m by myself. His father is away at work. I’m now being prepped for surgery. All I remember was waking up frantically an hour and a half later asking for my baby. His father had arrived by this time and told me the baby was just fine and the nurse had taken him to the NICU. When I saw my son, there were tubes everywhere and he couldn’t close his mouth. Dr. C couldn’t remove all of the tumor during the delivery. I couldn’t touch my baby for weeks, he was mute for weeks, and heavily sedated during that time. It was a month before I had the chance to hold him or touch him. Helplessly, all I could do was look at him. I refused to leave his side and thankfully so. There was a nurse that made a mistake while suctioning his secretions and she’d placed the catheter too far down and caused his lungs to collapse. He became apneic and turned blue. She was unsuccessful in reviving him and had to get the charge nurse and team to come in and start chest compressions to revive him due to her negligence. A week later, Genesis started having what’s called “Events” where he would lose oxygen and breathing became a struggle for him. A week later, he underwent another surgery to have the rest of the Teratoma removed. After being stabilized, I was scheduled to meet with a craniofacial doctor to start discussing reconstructive surgery since my baby didn’t have a jaw bone in the area in which the tumor was. But due to more frequent events, he became apneic and resubmitted to the ACUTE/Critical care unit which allowed for more attention and observation. He was there for a few more weeks, so I was there a few more weeks. Without being able to figure out why my son was experiencing these events, I was told he’d outgrow it because he was a preemie. Then I was told it was acid reflux. Another doctor said it was possibly his tongue falling back and blocking his airways due to lack of jaw support. No test were being run, and these were all assumptions. One doctor recommended a lip adhesion be performed but other specialists didn’t agree because he was too young and suggested a tracheotomy. I refused for a month because they were grasping for straws and not giving me any concrete answers. I went and got a second opinion from another fetal and craniofacial doctor. This was Dr. Barcelo. He informed us there was another option called the Jaw Distractor which works by putting a device on each end of the jaw and it’ll bring it together to keep the tongue in place. He said my son needed a tracheotomy to create a safe airway while having the procedure. In a meeting with his doctor, Dr. C, it was then explained to me that he’d also need a gastronomy type trachea after we’d finally agreed to the procedure. We were distraught He ended up having 4 surgeries on 6/29/21 and once he healed, we were finally able to go home after 4 months. He currently uses 5 different machines at home to assist with his medical needs. With all the care and more surgical procedures he’ll undergo as he gets older as well as the procedures that his insurance will not cover, I’m asking that if there’s anything you can give to help me ensure the longevity of my sons life and health, please do so. I appreciate you taking the time to read Genesis story. He fought to get here and we are fighting to keep him here.

 

The Woods Family