I would like to introduce Ms. Trinity Nicole' Hunton. She was
born July 21,2000 at 10:02AM, weighing 5# 5oz., 17 1/4' and a head full of thick black hair. You could have sworn she was wearing a wig. Trinity was born 37 weeks 5 days early.
To start her story off, lets go back to when her mom, Lanie was still pregnant. At 33 weeks Lanie all of a sudden blew up like a balloon. She went from looking 7 1/2 mos to 9 months
in a matter of 3 days. The Dr. did an ultrasound to check the baby's size, well what they found was that Trinity was not measuring up to what she was supposed to
be.. Her femur was measuring the age of a 31 week old fetus, So off to the hospital to have an
NST and another ultrasound done by a geneticist. All during her pregnancy Lanie was not feeling the usual kicks and jabs of a normal pregnancy. At 34 weeks Lanie went into preterm labor and off to
the hospital we went. That night is when we were told that there would be something genetically wrong with Trinity. Not knowing what drove us
crazy. The Dr. told her that she had what they call polyhydraminos, which is an over excessive amount of amniotic fluid in the uterus. This almost always
determines that there will be something genetically wrong with the infant. We cried and was very upset about the news. But they couldn't tell us exactly
what was wrong with Trinity until after her birth.
Well, Trinity came and she looked absolutely perfectly normal. Minutes after her birth they had to administer oxygen to her because her color was almost a maroon color. After that she looked real
good. Her apgar scores were 6 for 1 minute and 7 for five minutes. She was brought to the nursery to get cleaned up and then brought back for Lanie to
start breast feeding her. Trinity didn't take to breastfeeding too good. Trinity wasn’t prediagnosed
until Saturday afternoon. The neonatologist on duty that day looked Trinity over and said that she
looked like an RTS baby. Of course when we were told that it was RTS, we had never heard of it. The Neo told Lanie what is was and she was very upset and confused because she thought she had
done something wrong in her pregnancy. The Dr. told her it was nothing that she had done. It was
difficult for Lanie to accept that something was wrong with her little angel. So that night in the well
baby nursery the nurse was feeding her and then she stop breathing and started turning blue. They immediately brought her to NICU and that's where she stayed for one month. She was examined by three neonatologist and a genetist and all came to the same diagnosis. During her NICU stay she
turned blue on them several times and they had to revive her. Precious child had oxygen and feeding tubes and all sorts of things stuck to her chest. It
made us so sad to see her that way. But she was a FIGHTER and still is to this day.
Of course after that shock and being up for more than 24 hours , I went home and learned how to surf the internet real quickly and researched for 3 hours and read as much as I could about RTS and
try to understand what my beautiful granddaughter had. It was so heart breaking reading about what her life might be like and some of the things that
could go wrong. During that time I found some people to contact and after that , its been a wonderful experience .
So after one month in one hospital she was transferred to New Orleans Children's Hospital for
surgery on her little stomach and also to be evaluated on other finding. One day after arriving there
she had surgery. The procedure was a Nissen and a G-tube. Two days later they discovered she
had Pulmonary Valve Stenosis and a small hole between the 2 chambers of the heart. She stayed
there for 3 1/2 weeks and finally came home for the first time. We were all so excited . I was a nervous wreck driving them home.
Our little Angel is finally home with us. We are enjoying every minute with her and watching her
grow and learn.
With this precious little girl we are learning things that we would never knew or even have thought of.
Trinity is attending PT/OT twice a week and a homebound teacher is visiting with her once a week. She will be having OpenHeart surgery in the very near future to fix the PVS.
The most amazing thing is that Rubinstein-Taybi Syndrome is so very rare and that even Dr.s and nurses don't even know what it is. So everytime
we go to a new Dr. WE have to give them a brief explanation of what it is.
Here are a few things that Trinity is dealing with right now, Reflux, Aspiration, Kidney Reflux,
Pulmonary Valve Stenosis and a Heart Murmur. Trinity is now 10 pounds and 22 inches long, 3/4 inches and growing by the day .
Proud Grandmother to Trinity 5 mos RTS
Proud Mother to Trinity