All organs appeared to be normal at each higher level sonogram, but in November (about 28 weeks), excess fluid began to collect in the baby’s abdominal cavity. Amy also developed excess fluid, called Polyhydramnios. Initially, it was thought that this meant liver failure on the baby’s part, which would mean no prognosis for life after birth.

Due to possible complications and his size, Joel Matthais Zurasky was born by planned C-section on January 11, 1999. He weighed in at 9lbs 6oz, a huge baby, especially considering the fact that babies with Down syndrome often have low birth weight.

Thankfully, liver failure was not the case- it was something much rarer, called Chylous Ascites. It meant that his lymph system was not able to absorb long chain fats, and the fatty fluid was "leaking" out into the abdominal cavity. The only method the doctors knew to try was to put him on a specialized formula that contained only medium chain fats and see if his lymph system developed the ability to absorb the fats after a few weeks of this. After 2 weeks on TPN line (intravenous feeding directly into a main artery), they tried the specialized formula called Portagen, and he did not gain any more excess fluid. SUCCESS!!!

After 5 weeks in the NICU, Joel went home with an NG tube and the specialized formula. He eventually got rid of the excess fluid, and had a smooth transition to regular formula. It is thought that his body has now developed enough to digest the fats that he couldn't at birth, and should have no lasting effects from the experience.

Joel is having therapy to learn to take a bottle, as low muscle tone has affected his ability to swallow. He is taking 2 oz by mouth at each feeding at this point, and hoping that he will soon be rid of the tube.

Amy is a teacher with a background in Special Education. Her vast knowledge of the Parent-Infant Education and Development Program helped greatly in getting Joel involved in early intervention at 5 weeks old. Little did she know that her career would soon prepare her for her son!

Joel, at 6 months, is starting to hold up his head for long periods of time. He loves to sit and watch people. He smiles a lot for his mother, who is home on leave to care for him. Joel is also crazy about his sister! Katrina always makes him laugh by running her long hair over his face. She’s learned to be quick about it.... or else he’s sure to grab it and hold on tight! Ouch!

Joel has become a very important member of the family. He has already started to carry on the "baby" traditions of the Zurasky family and with pride! They expect only the best from him!