Katie had a very normal healthy pregnancy. Liam was full term and had a normal birth. Liam was born January 13th at 3:59am. The second he came out, something wasn’t right. Our son could not control his body temperature and was extremely lethargic, he didn’t cry or fussy. He was taken to the NICU (Neonatal Intensive Care Unit) where he stayed for a week until Liam was transferred to Children Hospital of Philadelphia (CHOP). Doctors were in heavy discussions with what was “wrong” with our son. His sodium was too high, putting him at risk of having seizures. Liam was blind, had a mutated pituitary gland, a conjoined thalamus, lethargic, didn’t eat, had a hypo thyroid, jaundice, and Laryngomalacia. The list of Liam’s medical issues continued to grow. A common question we had, why did all this happen to our baby? Not one doctor could tell us. We were told that there is not enough research or background on infant neurological issues and all they could do was put him on numerous amounts of medications to make everything stable. We, as parents, learned how to drop a feeding tube in through our sons nose in order to feed him. We became educated in giving him shots every night and administer medication 5 times a day. We learned how to use a gastrostomy tube (g-tube), which was surgically placed in his stomach, as well as learning to maintain, clean and change his G-tube. As his mother, Katie spent all of her free time at the doctors, ER, long hospital stays; not leaving him once. Katie laid Liam down to bed, kissed him good night on Oct. 27th, and went to bed; he didn’t cry or fuss. Katie went to give Liam his 6am mediations and Liam was gone. As parents we did EVERYTHING every doctor trained us and told us to do, and it just wasn’t enough. This is why we want to raise money for neurological research. So one day we can hope to have answers so a family won’t have to go through what we had to go through.
Thank you so much for thinking of our Superman
