a chance to live for baby Ylona

A chance to live

It was december 8, 2016 which was my first OB GYN check up. It takes 4 pregnancy steps to determined if I am really pregnant. And it was positive. This was my second child. My first born child was delivered via normal spontaneous vaginal delivery. I was very happy and blessed to have another child. I always have monthly check ups and able to have ultrasound by 7- 9th month. And here comes my 9th month. I was admitted to the hospital because of high blood pressure. Baby Ylona was delivered via ceasarian section. I was already at my room just waiting patiently for my baby to be delivered. I wondered why it takes 48 hours for me to see my baby and within those days I saw my partner (Ivan) and my sisters are very worried as if something has to tell me. Then Ivan, hold my hand, and told me that my child has bilateral celf palate and her brain was deformed like a pear shape and I was like asking hundreds of questions in my head. The moment I saw my child in NICU with ventilator having a feeding tube and a lot of IVs on her hand and feet, my world drop quickly. I hold her little hand and always told her that we always love her. She was diagnosed with HOLOPROSENCEPHALY. It is estimated that HPE affects between 1 in 5,000-10,000 live births.Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250.Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants DO NOT SURVIVE THE PAST SIX MONTHS OF THER LIFE. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. The most severely affected children may live several months or years and the least affected may live a normal life span.Almost two-thirds of affected patients have alobar HPE and approximately one quarter are diagnosed with semilobar HPE. Survival depends on the type of HPE (alobar, semilobar, lobar) as well as the number of problems that often accompany HPE (seizures, breathing problems, hormone deficits, etc.). She also have CONGENITAL HEART DEFECT (ATRIOSEPTAL DEFECT, PATENT DUCTUC ARTERIOSIS) and 11 toes. She also has aspiration pneumonia and neonatal sepsis (ABO incompatability) in her few days. At the time she came out to my womb, she needs oxygen. We havent done the cranial CT SCAN because of financial problems. All our resources are gone since she have a lot of medications and daily medical needa. She is until now on a feeding tube because it may cause a lot of complications if she will fed through her mouth. Her pedia advice to have oxygen, suction machine, nebulizer and pulse oximeter to monitor her O2 and heart rate level at home. Ylona's knocking into your benevolent heart to extend donations. We may not know her life span at least we may give a normal life.

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RCBC

Account name: ALEXA PEARL JOY C. ROMERO

Account No.: 4215-8501-0448-9696