by Tiffany Burnette
I was diagnosed with Factor V Leiden when I was pregnant with Sammy. While taking shots of lovenox twice a day, I was monitored often through ultrasound by the perinatal providers. They found and monitored enlarged kidneys on Sammy and a varix in the umbilical cord. The verix is similar to a vericose vein and it was a concern because of my blood clotting diagnosis. So because I lost a baby when he was 7 months gestation, the docs decided to induce.
The birth went well, but Sammy had some jaundice which cleared up within a week. He also had undescended testicles and later hernias which he had surgery for when he was two weeks old. Sammy also had a condition called urinary reflux. So he had to be on prophylaxis antibiotics. Sammy is my third live birth and being busy with two other littles, it was just fun having him along and was grateful that he slept so much!
At 5 months old, I sat him in his chair to feed him a spoonful of baby food for the first time and he did not open his mouth or show interest at all. He struggled to lift his head up straight. This was the first time I felt concern. I mentioned it to the doctor but he was not concerned. As time went by Sammy became more cranky and whiny as my milk supply diminished but he was unable to eat baby food.
If I managed to get anything in his mouth, he gagged and threw up! His growth curve continued to fall and he was labeled failure to thrive. We stopped the antibiotics thinking it would help. And gratefully he didn’t get any infections at the time. He began to crawl at 10 months but had a fall down the stairs and we went directly to the ER. Soon after that he was evaluated for speech since that was protocol and it was found he was so far behind for a 1 year old.
We began speech therapy and feeding therapy. We found he needed so much stimulation to make his mouth know what to do with the food in his mouth! He didn’t respond well to baby food because there was no flavor or texture. He swallowed great when he had crunchy or spicy or cold stuff. We also went to a lot of specialists to find out other things which is how we ended up discovering that he has the genetic anomaly.
It was a very busy time in my life! Eventually, he got pretty strong prescription glasses, monitored often by ENTs (another story) and our urologist (another story), and continued taking speech therapy. Only recently did we realize that his need for more stimulation for his brain to register input is a global need for him. We enrolled him in the school system when he was 3 in hopes that he would receive more services…but our experience with the school system is yet another story!
Anyway, he continues to be behind about 2-2.5 years in many ways, but he also definitely acts like his age in a few ways (5yrs). And he is small for his age. We went to a developmental pediatrician but it wasn’t much help. We are continuing trying to understand his needs and help him. IT TAKES SOOOO MUCH PATIENCE! I admire all people who are called to raise and work with children with special needs. My advice to parents is to keep advocating for your child and give yourself a lot of credit and massages:)