Our Story & Miraculous Journey...
Began with the birth of our Beautiful Baby, such a tiny thing at 31 weeks, 2 lbs, 11 oz emergency Cesarean due to extremely low heart rate. Deviin was in the NICU at INOVA FAIROAKS Hospital, Virginia for 4 weeks thriving and coming home in 4 days. How excited I (Songia W Tillman / Mommy to my babies & even now as young adults) was to get his nursery ready. I was at Walmart shopping for some last-minute items to finish his Disney-themed room.
When I returned home, my entire family in a convoy of vehicles were waiting for me. They all chimed the hospital could not reach you. They tried to page me (pagers in 1998) with no success. I did not receive not one page. But they had reached a family member. I immediately jumped into one of the vehicles and we safely sped to the NICU. I was just there yesterday, what happened was the question racing in my head. Ignorant to any of the complications that could occur to a preemie, I was extremely unaware of what a ‘NEC’ was. Necrotizing Enterocolitis (NEC) was the culprit. “Necrotizing enterocolitis (NEC) is a life-threatening disease that affects the intestines of newborns, especially premature babies. It occurs when tissue in the intestines becomes inflamed and injured, which can lead to bacterial invasion, cellular damage, and death. NEC can cause intestinal perforation, which can lead to peritonitis, sepsis, and death.” By the time, they discovered it, he was being flown by helicopter to INOVA FAIRFAX Hospital, Virginia. The teams were administering five (5) of the top antibiotics and nothing was knocking out these invaders (bacterias in the intestine). The next option was surgery to remove the portion of the intestine that was damaged by the rampant bacterias which caused the bowel to become gangrene. Affectionately known as Baby Boy Washington his whole time at INOVA FAIRFAX HOSPITAL NICU, Initially Deviin in total lost only 10 cm of intestine. But none of the SUPER Antibiotics were working. Deviin was so sepsis that he looked like a 20 lb Turkey and was only 4 lbs at this time. We were informed that Deviin had to go back to surgery to remove the intestine that had gone gangrene since the first surgery – it was this surgery where he lost the majority of his intestine. He even lost his ileocecal valve – he was left with only 10 cm of the small bowel and a small portion of the large bowel connected to his rectum. He only had the minimum to even survive! I was devasted! My anxiety already flared and became even more peaked. We were told he may not make it through the night. However, by the Grace of God, He survived! However, the Super Bugs were still attacking the little intestine that remained. A couple of days after that devasting 2nd surgery, I will never forget the Infectious Disease Doctor coming to me and saying I stayed up all night going through some of my medical books and I came across Flagyl. “Let’s administer it and see!” And guess what, it worked. My God to whom we Praise, Flagyl was the antibiotic to work! It was like instantaneously, Deviin showed improvement with Flagyl on the attack of these nasty Super Bugs this time!
Deviin was on a ventilator for months and hurdled other challenges but he was on the road to recovery. I covered his incubator with many Scriptures, so when the nurses and doctors stated that he was the sickest baby in the NICU and the odds for his life was not in his favor, "there are other babies not as sick as him and have not made it'. I stated,
"Ok. How do I treat him when he comes home?” “I was told - you are young; you can have more.” And I did, later adding three (3) more Beautiful girls (Makaila, Briyanna & Jaamila) to love and play and tease Deviin growing up. I was told by a couple of the doctors – when we are on our deathbeds, I want you there (their exact words)! I stated it was not me, it was my and my family's STRONG FAITH in Our Heavenly God and Healer Jesus Christ!
Baby Boy Washington/Deviin came home 6 ½ months later, on Total Parental Nutrition (TPN) administered via Central Line. Within 4 months, TPN damaged his liver and his bilirubin count was the highest it could be. Every part of his body that could be yellow was extremely jaundiced. His Central Line got infected and honestly, that was the best thing ever. The doctors said, "Let’s just take the Central Line out and get him off TPN". At 10 months old, he got surgery at Johns Hopkins Hospital, Baltimore, Maryland to resection his minimal remaining bowel ostomy and surgically inserted a G-TUBE. His liver was so damaged beyond repair. I was told by his GI Specialist at Johns Hopkins that he would not make it without the Liver Transplant. I got worked up to be Deviin’s living liver donor and they said, "Why not, let’s put him on both the Liver & Bowel Transplant Lists" at 1 ½ years old. I prayed and prayed and prayed – YES his liver enzymes were normal within 3 days to a week and Deviin was taken off the Transplant Lists. He did not have to have that Liver Transplant; therefore, not receiving Bowel Transplant either.
Deviin's condition with the loss of the majority of his bowel left him with SHORT GUT SYNDROME & Failure to Thrive. PRE-TRANSPLANT-Deviin has Severe Malabsorption, Extreme Vitamin Deficiencies, Vocal Cord damage due to being intubated for such a long time during Sepsis (since recovered), Several Hospitalization for Dehydration & Respiratory Syncytial Virus (RSV) & E-Coli Bacteria, Lethargy, Sinus Bradycardia, Thrombocytopenia, Partial Seizure, Encephalopathy, Paralytic Ileus, Gastrointestinal Dysmotility & in 2018 the start of Abdominal Distension (the size of a basketball).
The Early Years
Even with all of the obstacles presented above, Deviin was an extremely happy and energetic child. Even at all his medical appointments and hospitalizations, Deviin was always smiling, laughing, playing & enjoying his laugh to the fullest before and after getting over several illnesses all resulting from the initial complications of NEC. I always remember how lethargic he was at admission and by the time he recovered saying boy is it time to go home and I could not keep in the hospital bed, we would roam the floor with IV POLE in tow until he was discharged. I cherish those moments. Once again not taking any of this for granted, he recovered each & every time!
Sending a Heartfelt Thanks to Family, Friends & My Co-Workers
We Love You for all the support & understanding & just being there for us! To my previous Co-workers: especially those times at work you gave me time to be out with Deviin to be at his bedside all those multiple hospitalizations!
Sending a Heartfelt Thanks to Deviin’s Educators
Deviin went to Elementary, Middle and, High School graduating in 2017. Deviin had the best teachers ever. We want to thank each & every one of them. It takes a SPECIAL PERSON to give the amount of LOVE IN EDUCATION the way he saw with Deviin and his classmates!
Gastrointestinal Failure & New Medical Journey
Deviin started to not be as active and almost bedridden starting 2018. This was a new something. He was extremely lethargic. He was still putting on weight, but he would fall asleep immediately when we got in the car. Deviin was not interested in swimming which was a favorite past-time when he was younger. Deviin was not interested in swimming stating that his body was bone-chilling cold nor any of his favorite activities like bike riding, playing basketball, running around in the backyard with his siblings, snowboarding down the hill when it snowed hard, watching all his movies in the family room with the rest of the family (to name a few). He would just stay in his room and did things that did not exert too much energy like develop and build his YOUTUBE Gaming Channel (DeviinGamingPender). I would take him to all of his specialist but none diagnosed what would to come. His stomach was the size of a basketball and though the doctors would say it was distention, there was never any remedy to all the pain he was enduring. In 2023, Deviin started losing weight. He was already malnutrition due to his SHORT GUT SYNDROME weighing a little under 100 lbs. His weight dropped from a little under 100 lbs to 79 lbs in a matter of weeks. I drove him to INOVA FAIRFAX Hospital ER after he could not even walk to the bathroom by himself. Something was extremely wrong. He was hospitalized for about a week and discharged after recovering with IV FLUIDS. Then the following week he was still losing weight and not able to walk without wobbling and his stool was peer liquid. I drove him back to INOVA FAIRFAX Hospital ER. I call her one of our Guardian Angels, but a nurse stepped into Deviin’s hospital room after being admitted and said, “You know, I use to work for Dr. Subramanian at GEORGETOWN MEDSTAR on the Transplant Team. You should go see her!” I had been searching for 5 years for a Specialist & Team to help Deviin since he PEDIATRIC OUT. I spent weeks trying to get a New Patient appointment without success. Again, in the middle of the night trying to walk to the bathroom, Deviin was wobbling badly. I immediately got him dressed and drove to GEORGETOWN MEDSTAR ER. From that share of information by the nurse at INOVA FAIRFAX Hospital, our New Medical Journey began. After being admitted, I kept asking for the team to please get Dr. Subramanian. She finally came to bedside and the rest is a history. I must admit that I did not want to hear the words TPN nor TRANSPLANT. We had skirted these for 24 years! But here we were! Deviin had to go through what Dr. Submanian & Dr. Matsumoto call Checklist Evaluation to deem if TRANSPLANT was the course of remedy. At the end of each Evaluation, Deviin was qualified as needing the Extremely Complicated Bowel Transplant for his Life-Threatening Medical Condition(s). We could not skirt it this time and on November 28th, 2023, Deviin was Transplant- Listed. But our FAITH & PRAYERS told us it was the right course of action to give Deviin a better quality of life and survival.
Sending a Heartfelt Thanks to Deviin’s Medical Specialists
We LOVE & want to thank each and every one of them from birth to now. Each has dedicated a lot to get us through this with Deviin. From the extra research for his case only to coming to his bedside to hear Deviin’s story and immediately setting the medical course of action to help him; We received the call on March 11, 2024, to immediately report to the hospital, Deviin has a viable match and this was happening! After a 10-hour Transplant Operation, both his Surgeon and GI Doctor, told me how bad of shape his gut was, and seeing it out told them that Transplant was the only answer. The intestine is usually the size of a water hose, Deviin’s was the size of (imagine) 4 huge red heart shape helium balloons (I was looking at his balloons in his hospital room and that's the only comparison I could immediately think of)! The pain he was enduring all this time – my heart sinks!
If You Do Contribute, Your Support Will Ease the Financial Hardships
We want to thank each and every one of you for your support emotionally and financially. Mommy is Deviin’s caretaker and has not received income (lost wages) since his hospitalizations. I am at his bedside 24/7 at the Transplant Surgeon’s request. But even if he had not stated it, I was going to request it. I am his biggest advocate and supporter. I know it was each time he woke up and those gleaming eyes saw me, it helped his recovery in the past and presently. We have had a stressful and always on-our-knees journey! It has been hard! Your support will help us cover lost wages for Deviin keeping home mortgage/rent & utilities expenses current and paid; for caretaker, food while at the hospital; his family traveling and lodging expenses; non-covered medical expenses; rehabilitation expenses not covered by insurance; restocking and maintaining food stock as Deviin’s diet is restricted as a Bowel Transplant Recipient after discharge; Transportation: Deviin will be in the hospital from 6-8 weeks. Deviin will be required to come to appointments at least 2 times a week for a long recovery post-discharge. Our family vehicle is over 13 years old and is starting to have all the older vehicle issues which have been quite costly to repair and still need additional repairs. The gas indicators tell us that the vehicle is ½ Full but we have run out of gas and been stuck on the highway in route to the hospital several times. The vehicle has been put in for repairs on this issue and still is not fixed. We are having to acquire a newer reliable vehicle but with no real income this adds stress to an already stressful situation.
Deviin has repeatedly requested before the transplant when he was so sick and could barely move for virtually three (3) years, that he wanted to enjoy a normal life, and the first thing he wanted to do once he got his Transplant, was go to Disney and/or a Disney Marvel Cruise, secondly, get an opportunity to meet Cake Boss Buddy Valastro; thirdly, go fishing with Dustin Connell (DC Fishing) or at least attend one of his competitions. We do appreciate each and every one of you and every level of support will make a lasting impact for Deviin who is our MIRACLE TROOPER who has Grit to go through all that he has and still going through! He is one the most loveable, loving person & if I could trade places I would without hesitation!
We are immensely THANKFUL!