This is my 5 months old daughter Jerry Martoinette but we love and everbody calls her Buchik.
It was time for the gender ultrasound. Me and my husband were in the car doing a playful argument if our baby is a she or a he. We were telling each other what would our baby be like growing up, what sports and instruments she would be playing and the academic achievements be like, and who would decide for the name if the baby is a he and who if the baby is a she. We were so excited but everything turned black when we found out that she has this very rare case.
Her head is not fully covered with skull. There are 4 holes and 1 in each side in between her eyes ang ears, full lip and cleft palate. Her head is bigger than the normal size of her age.
Then my OB said, "If abortion is legal in our country, that would be my suggestion because she would be pittyful growing up in this situation." Legal or not, my husband and I decided to carry our baby to full term. "Her heart may give up at any time", she said. If she reaches full term, she will have a maximum of 24 hours to live"; she added.
Everynight I cried broken hearted but I just can't bring myself to question God because I believe everything is according to His will and my understanding and knowledge is nothing compared to Him. That's what I keep on telling myself until this very moment, "I have no right to question my creator."
When my mom and I went to the mall to buy her clothes, we only bought 3 pairs because of what my OB said.
When she came out, she was only 2.1 kilos.
Buchik is now 5 months and she is 5.1.kilos. She has a dislocated hip. No bone structure for her nose. She has been on OGT since then.
Aside from fighting for her life, she also has a battle with holoprosencephaly and epilepsy. Her head is now 49 cm. We still can't get to the public hospital because there are only a very limited slots so we have to wait for the list. Her neurosurgeon requested for her shunt operation on November 23, 2017 but still we haven't done it yet.