We had a very successful Baby Loss Awareness Week this year!
Our lovely baby boy, Yusei, has arrived on a full moon night of April 20th, 2019, and gone back to the sky on April 27th, 2019, due to numerous complications caused by Trisomy 18, or Edward's Syndrome.
A full of life of 7 days and 22 hours. He quietly took his last breath in his mama’s arms as his dada sang for him. Yusei has fiercely fought like a samurai-warrior and quickly run through but fully lived his life.
This is a request to donate for Kanagawa Children’s Medical Center in Yokohama, Japan, where Yusei was born, lived and returned to the sky. Our aim is for them to maintain their outstanding grief-care program for the babies and families, educate their staff members with programs as such as well as other outside entities in order to raise more awareness in society about miscarriage, stillbirth, and newborn-loss and the endeavors the babies and families have to go through.
It is a long page, but we truly appreciate if you can read it through to the end and help donate afterwords. (You can also skip the whole story to the end if you’d like.😉)
Yusei was born all natural but with Trisomy 18, or Edward’s Syndrome, which is an extremely severe chromosomal disease with an extra chromosome on a regular pair of number 18 chromosomes in each cell he had in his body, which inevitably caused various kinds of dysfunctions and malformations throughout his tiny body. He was such a fierce samurai and quickly run through but fully lived his life. He was amazingly strong and smart with adorable 6 fingers and numerous complications inside and outside. He was and still is our proud son who was brave enough to fight throughout his life with his tiny body but big spirit. We embrace his fate that he was here with us very short but to tell us how much he loves us and how precious life is.
At my 37-wks regular pregnancy checkup on Tuesday, April 16th, the doctors kept reviewing the weeks, the amniotic fluid, the heart, intestines of my baby’s via ultrasound and repeatedly checking how his heart was functioning that left us incredibly worrisome. As they finished, they brought us some serious doubts about our baby and suggested we had to go to another hospital specialized in prenatal care and infants’ disease. We first didn’t understand what was going on. On the next day, Wednesday April 17th, the children’s hospital we visited confirmed our baby has trisomy 18 with numerous complications and told us his life-expectancy would be extremely short, such as a day or even minutes and it could happen at any moment of my 3-weeks-left pregnancy. I first lost my mind. We broke down and were devastated.
Being announced of your child’s death while embracing him/her in yourself.
We could only cry and pray.
On the night of April 19th, Friday, despite my initial due on May 10th, my contraction started with a full moon. I got into the delivery room around 23:30 and my beautiful baby came out at 0:29 on April 20th. He and I worked out together so well with this infinite bonding love. We named him Yusei, 有正(ゆうせい), named after the first kanjis of both my husband’s (正浩/Masahiro) and mine (有紀子/Yukiko), so we all can know forever that he is our son.
So beautiful and so calm that I could not believe he was trisomy 18. But he certainly was.
Ever since he was born, nevertheless, we felt the countdown has started. The amazing and hopeful days of breastfeeding and nursing one’s own child were our precious last moments we could spend with him before he’d be gone. His breath was getting weaker and weaker every day due to his atrial septal defect. He could not even swallow his own saliva due to congenital esophageal atresia. Nor could he drink my milk, although my body kept producing enormous amount of milk every day. Life is harsh. I could not stop crying up to the sky.
We fought with him. We repeatedly and numerously debated and argued with our medical team if surgery allows him to live longer, what kinds of surgeries he may be able to have, how effective the surgeries would be for him, etc, without knowing how long he could live at all. We asked them so many questions about his conditions and possible treatments he could get and we simultaneously looked for second opinions from other prospective hospitals with advanced medical treatments for trisomy 18. We didn’t want to give up on him. However, as his breath started getting weaker and weaker due to the constant severe apnea attacks and recurring fatal cyanosis, we have gotten to this realization that it is also our role as parents to accept and embrace his and our destiny and send him off with our warm cuddling, rather than letting him challenge all the difficult surgeries with little possibilities. We took his saturation and pulse monitors off of him on his 5th day, April 25th.
We stayed together with him and held him in our arms, embraced him, kissed him, sang for him, talked to him, all day long, all night long since then, until he took his last breath. We enjoyed and appreciated each moment we spent with him. Each breath, each blink, yawning, cry, and each move he made was a gift and we tenderly touched his body as if to make sure he was still with us alive.
He took his last breath at night of April 27th. We bathed him and changed his clothes and still sang the songs his big sister used to sing for him when he was inside me. We slept together with him in between us. My sweet boy laid right there with us so peacefully.