Mom to Hitomi Keimiko
3/26/15 – 6/14/15
Daytona Beach, Florida
My daughter Hitomi was born on 26 March 2015 and she had encephalocele with microcephaly. It’s a very rare birth defect. Basically, before I even knew I was pregnant, when her body was forming, her skull bones didn’t close properly in the back of her head, leaving a small hole. It was covered by skin, so we were lucky there, but her brain cells leaked out of the hole and into the skin and started to overproduce cerebral spinal fluid which stretched the skin to form a large sac behind her head. As she grew, her head growth and brain growth started to fall behind and there were signs of abnormal brain tissue outside the skull, but it looked like all the functioning tissue was sitting inside the skull but just smaller.
However, once I hit my 3rd trimester, her head growth slowed way down (it was 10 weeks behind in size then), and so there was concern as to whether or not her brain growth was just slowed due to lack of pressure and so on from the birth defect or if functioning brain tissue had started to leak out the hole, into the sac. Now to add to that, her defect caused some additional structural issues that put pressure on her brain stem and there was nothing they could do. The brainstem (which controls breathing, heartbeat, etc) and her cerebral cortex (controls movement, assists with breathing, etc) grew too close together because of her small head size and they were pressing against each other. Unfortunately, nothing could have be done about that because it’s how her brain grew. This is what threatened her life. Otherwise, she would have just been severely mentally disabled.
Originally, they were going to remove the sac and any tissue within it but with the new developments, they didn’t feel that was safe to do anything with it at that time. She also had seizures even before she was born and had to take meds for that. My Daddy drove halfway across the country just to meet her when she was a week old, and I remember him telling her that he would gladly trade whatever life he had left and give it to her so she could stay with us.
She couldn’t eat like normal babies so she had to have a special tube surgically place into her tummy so she can be fed. I remember watching after her surgery. She was on a breathing machine because of the anesthesia, she couldn’t breathe on her own. I watched as she started breaths and the machine finished them, as well as the machine doing it all. I was so scared she wouldn’t get off the machine. Every time they tried to wean her off, they would have us leave the room, because it wasn’t a pretty sight. I remember the blank look in her eyes when she would stop breathing after they thought she was gonna push through unassisted. It was scary because she had apnea where she would forget to breathe all the time, but she could always pull herself out of it on her own and this time she wasn’t.
It took her 48 hours to overcome the anesthesia but she did it. About 2 weeks later, in the beginning of May, in a 2-3 week period, she’s almost died 25+ times. Her heart rate dropped into the 30’s, and her oxygen sats in the teens. I remember at first, when they told me she was having these issues, I hadn’t witnessed them for myself so in my mind, “there was a stat drop and she needed a little suction.” But it was not so simple. We were having a meeting with doctors about what to do, because her condition was terminal and we didn’t want her to suffer, we originally had a DNR in place but it was lifted for the surgery to place her g-tube and we just never re-instated it. We were reluctant to put it back and wanted to wait another week, so we finished the meeting, and we went to NICU to spend time with Hitomi and within minutes she got that blank look that I recognized from when she stopped breathing and couldn’t start back up. We watched her stats plummet in a matter of seconds so I called her nurse, and in the time it took to call her nurse, Hitomi started to aspirate because of major reflux. We watched helplessly as she changed colors, and several staff suctioned out what seemed like a never-ending flow of formula. We watched as they bagged her to get air in her lungs. After seeing how much she suffered with every episode (by this time, it was only her 4th), we decide to re-instate the DNR right then and there. We didn’t want her to suffer.
Luckily, we figured out that the stat drops were a result of seizures. So as they were trying to figure out the magic number for the dosage she needed, she continued to have more episodes– so many that I pretty much moved into the hospital and her Daddy came to visit whenever he wasn’t working. And after every episode, she would be placed in either mine or her Daddy’s arms and almost instantly, she would improve and stabilize. Eventually they maxed out her seizure meds at this point, they were working and she was stable and doing well.
You would think that throughout this journey since her birth that we would be absolutely devastated whenever we were near but truth is, Hitomi gave off what we like to call an “aura bubble,” and at first, we used to think that we just felt that way because we were her parents, but that wasn’t the case. Anyone and everyone who came within a certain distance of her felt it. If you were in her aura bubble, anything negative that you could possibly feel just disappeared. It was like nothing else existed except you and her. It was closest thing to peace I have ever felt in my life. Even in memory, I can’t duplicate the feeling, and I realized that it was because it came from her and was only something she could give.
Then on 14 June 2015, her paternal grandma and I went to visit her like usual. She cooed and voiced her content with being held by both grandma and myself. We left at 6:30pm because of shift change, grabbed a bite to eat and arrived home at 8:30pm. Little did we know but at the same time we got home, her heart just kept slowing down until it stopped at 8:50pm while she slept. I remember thinking how impossible it was when I got the call. We were just there. And then to top it off, Hitomi was notorious for beating the odds so nobody really thought she was gonna depart from this Earth after a while.
But with her death, that makes a total of four children gone (three due to miscarriage). She was never supposed to exist, yet she was here. She was never supposed to survive birth, yet she did. She was never supposed to live more than a few days, but she surprised us all with her incredible will to be here by giving us 11 more weeks filled with immeasurable joy. She touched the lives of many and was loved beyond words — so much so that nurses took on extra shifts just to make they are the ones who took care of her and no one else.
She was and always will be the strongest person I know. She had a strong personality and a will to live, love and be loved. I am so heartbroken that she is gone and that I remember thinking that I will never be able to feel her tiny little body lay on me or smell the scent of her hair or to feel that special kind of bliss whenever she was physically near, but I am so proud to be her mother, and her Daddy couldn’t have asked for a better daughter. We had her memorial service on 30 June 2015, and now the process truly begins. It’s a pain, I wouldn’t wish on my worst enemy. I am not sure if I even believe in a higher power anymore and if I do, what level or even what religion, as we have a melting pot of various beliefs in my family. Although people mean well, we’ve been told how to feel, what to believe and how to grieve. And any grieving person knows it just doesn’t work that way. But I had a friend say “your anger and loss of faith is not without understanding. If you should never put your faith in a higher power again, that’s okay. But if you must put your faith in something, put your faith in Hitomi and know that she is with you, even if you can’t always feel her.”
I remember wondering just what she meant by that, but I will say this, we have her urn on a shelf in our bedroom, and the first night we brought it home, for the first time since her passing, we felt something familiar — her aura bubble. It was different in the fact that it didn’t take away the pain but simply eased it, but the feeling was undeniable, it was coming from her urn. It was Hitomi letting me know she’s still here — in a different form but still here, so even though her physical departure is still very raw and painful, I now understand the advice of my friend.
Hitomi means beautiful eyes in Japanese and her middle name is also Japanese, and it means beautiful blessing. So few people can live up to the name given to them. In her short time on Earth, she more than lived up to both.
Mariko can be reached at email@example.com