In the interest of full disclosure, I am editing this story to let you all know that all funds received will be distributed to the beneficiary, Margaret Camille Green, for whatever her & Jay's needs are at this time. As most of you know, Jay & Camille are Theodore's parents, as well as parents to 7 more amazing, incredible, sweet and really great kids! We all wish the whole family much happiness & continued good health!!
The story below was given to us by Camille to share with you the details of their situation thus far.
Again, Thank you Thank you!!
A Journey With Trisomy 18
Theodore was born on 4/17/18 weighing just 5lbs 7oz, and was 17 in long. Even though he was small, he was a full term baby, born at just over 39 weeks. He was born with a condition called Edwards syndrome, or Trisomy 18. It is a chromosomal condition associated with abnormalities in many parts of the body.
We were told early on that he wasn't expected to make it full term, because of his condition, which had caused multiple birth defects. He had a large VSD(ventricular septal defect, which is a hole in the bottom chambers of the heart), choroid plexus cysts on his brain, fetal ascites (abdominal fluid restricting growth of his organs), horseshoe kidney (one large connected kidney), shortened femurs, clenched fists, and a double bilateral cleft lip and palate. This is what we found out at our 20 week anatomy scan, and we were encouraged to terminate the pregnancy. We were told that the baby was "incompatible with life", and would have a "failure to thrive". But, how could we? Every life has a purpose, no matter how small.
Our faith is important to us and we felt like he needed a name that reflected our beliefs. We chose Theodore Tobias, which means God's gift, and the goodness of God. And, he truly is a gift, so sweet and innocent! I've received so many compliments on the strength of his name. I think that it's very fitting for such a strong and resilient baby boy. He is a fighter and has beaten so many odds, especially being born alive!
When Theodore was born he spent the first 3 weeks of life in the NICU. He was able to come home for about 3 weeks afterwards, but was eventually readmitted due to heart failure. He needed his heart repaired, so that he could thrive. He underwent a curative heart surgery to repair the VSD, small ASD, and a PDA closure. Also, due to his cleft lip and palate, he cannot take anything orally( no nursing, no bottles, even pacifiers are a challenge). So, he has had a surgery for a G tube placement, and nissen fundoplication (which relieves reflux, because he's at a high risk for aspiration), and a double hernia operation. This poor baby has been through so much, more than most of us have to experience in a lifetime. During his 3 1/2 months of life, nearly 3 of them have been spent in the hospital.
We are a family of 10, so this has been a very trying time for us, both emotionally, and financially, but we are doing our best. We have faith that with God's strength we will endure. I have never been one to ask for help, but I know we are called to be humble, so any help you may be able to provide will be greatly appreciated. If all you can offer is prayer, then we are very thankful for that, because it is more important than any monetary value. If you are able to offer any financial assistance, then we're eternally grateful for that as well. Please keep my family, and our dear sweet Theodore in your prayers. He's one tough little guy, but the road ahead is uncertain and not free of challenges, or additional surgeries. Thank you for taking the time to read our story.
God bless and peace be with you all.
The Green Family
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- Brian Bumbarger
Fundraising team: Team Theodore Tobias (3)
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