Mia Ezawa was born full term on 8th January 2014, weighing 2324 grams. She was delivered through C-section due to frank breech presentation.
During 7 months of pregnancy, the doctor was suspecting some abnormalities with Mia's growth. Since then I was in high risk pregnancy. After having Fetal Echocardiography and MRI scans, I was told that Mia might have the condition called Hydrocephalus, which is treatable after birth.
On the day of Mia's birth, her appearance looked perfect like a healthy baby, but we found out that she couldn't cry and couldn't swallow her own saliva. Her throat was very narrow and her lungs were not strong enough to cry. She needed to be fully taken care of in NICU at Japanese Red Cross hospital. Mia was fed expressed breast milk through a tube to her stomach, a ventilator (breathing machine) was needed in order to regulate her breathing, and phlegm suction was constantly done to remove her accumulated saliva and phlegm that interfered with her breathing. It was really hard to watch her suffering and shedding tears during each suction almost every hour.
Day by day, me and my husband's hopes were up when she didn't need the radiant warmer on her bed to be kept on, seeing her eyes open more frequently, and especially after Mia had survived two lung infections. It was about 2 weeks after her birth when we asked the doctor about when can we could possibly bring her home. And that's the time when the doctor came up with the result of Mia's head CT scan, where it showed that her brain was only 1/4 of normal size and the rest was filled with fluid.
Mia was diagnosed with condition called Hydranencephaly which is a very rare case that affecting 1 in 10,000 births worldwide. The doctor told us, this condition is not treatable. The only way to have her home was to install a mechanical ventilation, by inserting an airway tube by cutting a hole in the neck, while her whole life will be depending on that machine, but she wouldn’t be able to talk or eat through her mouth anymore. Me and my husband had the saddest moment and biggest decision making of our lives. I was really against the idea and I didn't want Mia to get hurt further therefore we decided not to go with it, instead keeping her under the NICU care.
Mia fought to survive for another 2 weeks until the sudden call from the hospital brought us rushing to the hospital. She was very pale, struggling to breathe and being rescued with bag-valved mask by the time we arrived. Me and my husband held her on her very last moments, before she passed away exactly on her 1 month birthday, 8th February 2014.