Liliana Isabel was born October 12, 1998.  The pregnancy was rough with up and down levels of amniotic fluid, and in and out of labor.  We found out she would be born with an omphalocele when I was about five months along.  Shortly after, I started taking meds every two hours day and night to stop the premature labor.  That didn't always help.  I was in and out of the hospital,  and on bed rest for about three months. 

Two days after the medication was stopped I went into labor.  One doctor wanted to do the C-section, and one wanted me to deliver natural.  I decided not to take any chances and went along with the C-section.  I didn't want the omphalocele to break open.  We didn't know what we were in for exactly.  The doctors told us that twenty-five percent of babies with omphaloceles would have a heart defect and fifty percent would have a syndrome.  Since the amniocentesis was normal we would have to wait and see.  Liliana was born shortly after midnight, weighing six pounds and thirteen ounces.  She was almost twenty inches long.  When we got to the NICU early that morning to see her off for her omphalocele repair,  there were a number of things wrong.  She had problems with her kidneys, her heart, large tongue,  and of course her omphalocele.  The omphalocele was repaired first time, thank God. The rest gradually got better with age.  (All but the tongue of course)  There were many doctors standing around her. This is not a way you want to see your child for the first time.  I remember that it was very scary.  The genetics doctor pulled us aside five minutes before she left for her surgery and told us he thought she had a rare syndrome and wanted to testing on my husband and I.  After a two week waiting period they told us that they were diagnosing her based on clinical symptoms. The first doctor told us the syndrome would just make her larger, and they would explain more later.  Then they told us the whole truth.  I remember avoiding the genetics doctors, like that would make everything better.  I never realized something so tiny would be able to develop tumors.  In a way I was afraid of her.  I was afraid I couldn't handle it .  I didn't think I would be strong enough.  And I tried to shut everyone out of my life. 

Liliana was only able to eat by mouth if a therapist was working with her, but usually she would aspirate instantly.  She was supposed to come home in the middle of November and the day she was being released she started turning blue.  The doctor said it was positional.  Then later at night her bowel movements were pure blood. She developed a severe infection in her intestines that had moved into her blood stream.  We thought she wasn't going to make it.  We had a priest from are church come in and baptize her. 

Liliana was lucky to come home on December 30.  Although the infection kept her there longer it also gave her a second chance at a normal life.  She began eating from a clef palate bottle, with a preemie nipple.  We had to hold her face to seal and squeeze the bottle for her.  With intensive therapy Liliana has come a long way.  She now walks, which some said she may never, and she eats by mouth.  She goes for AFP's and ultrasounds every three months.  She is definitely a miracle with a will to survive.  And I know now that the day I thought would be the worst of my life, turned out to be the best.

Sincerely,
Amanda

February 2000