What do you do when the baby you’ve been joyously preparing for is diagnosed with life-limiting illnesses before you’ve even left the hospital?
Because of Hawai‘i Care Choices, we had a place to turn to at the most horrible time in our lives.
On December 1, 2017 my husband and I were celebrating our first anniversary. That same day we welcomed into this world our beautiful baby boy, Taite (pronounced Tate). It was a surprise to us both, because we had plans to go to Waikola, have a relaxing day by the pool, and enjoy some malasadas.
But Taite had other plans.
My pregnancy was great, and when I first got the labor pains I thought it was the Braxton Hicks “practice” contractions. But in a few short hours we were holding this tiny bundle of joy in our arms.
My husband and I didn’t have much time to enjoy the newest addition to our family. Shortly after giving birth the doctors at Hilo Medical Center came in to tell us something was wrong. They flew us out to Kapiolani Medical Center for Women and Children on Oahu, which was beyond scary.
When we got there we thought it was just a problem with his heart. They called it a Congenital Heart Defect. We were at the hospital for 32 days and when we left, our baby boy was still hooked up on oxygen. The plan was for us to come back in two weeks, see the cardiologist and have his heart fixed.
We spent the next two weeks at home in Hilo, surrounded by family. It was amazing.
But then we got the call. Taite’s gastroenterolist said “I need to see you now.”
We flew back to Kapiolani where Taite was diagnosed with Alagille Syndrome. It’s a DNA birth defect that is a 1 in 100,000 chance. Parent’s can be carriers, so my husband and I got tested, but neither of us were carriers of this DNA. Our son got it as a random anomaly.
It was heartbreaking.
Now that Taite had a congenital heart defect, and a liver issue and a kidney issue, we were referred to Seattle Children’s Hospital in February 2018.
My husband, and I were flown out to Seattle with our son, Taite. We were met by a wonderful medical team who did all the tests and a week later gave us the prognosis. Things weren’t good.
Thirty-two cardiologists held a conference about my son. They said they could repair his heart, but it would only be a temporary fix.
He would spend the rest of his life having surgeries and living in the hospital. Without having his heart completely and permanently fixed he would never be eligible for a kidney or a liver transplant. Taite would never be 100%. And even if we went through every surgery he needed for the rest of his life, they said he wouldn’t make it to his 18th birthday. His Alagille Syndrome was the worst case they had ever seen.
The other alternative they gave us was to love him, to bring him home, and to be a family. And that was hard. As parents it was the hardest thing for us to hear, and we were left with a difficult decision.
We prayed about it, and we prayed about it, and we prayed some more.
At 3 and 4 months old, your babies start showing you their personality. They start laughing, they look deep into your eyes, they’re cooing, and giggling, and throwing their head all over to see what’s going on.
Taite was strong willed and made this decision for himself too. He had been on oxygen for a long time with no problems. But as soon as we shared with him what the doctors had said, for the first time he pulled the oxygen tubes out of his nose and gave us this look of “mommy, daddy, take me home.” He knew what he wanted.
Hearing what the doctors said and knowing that our baby’s life would be in a hospital, away from family, we both came to the decision to love our son the way only a family can. We didn’t feel like we were giving up on him, the best medical team in the world couldn’t heal our baby boy. I was going to love him as a mommy should. Jered was going to love him in all the best ways a daddy does. And together we were strong in our faith, our love, and our 'ohana.
On March 7, 2018 we were able to leave Seattle and come home. But because of Taite’s condition we would have go into hospice care.
“What do you mean my baby is going into hospice? Hospice was for my grandmas. Hospice was for my grandpa. That’s great but this is my baby. I’m his momma, I can take care of him. I can give him everything he needs.” I remember telling the doctors. But it was a means to an end, so we said if this gets us home, we’ll do it.
The Delta Flight Team in Kona met us with a Burden Bear at the gate. It had a poem on it that said:
I’m not a fancy bear
I’m actually quite small;
But I’m here to take your burdens
I can actually take them all!
I don’t have all the answers,
But I have faith, and you should too;
So keep me close and know I care
I’m always here for you!
It made us feel very special and supported. These strangers doing what they could to take care of us.
We arrived into Pōhai Mālama at midnight and enrolled Taite with Hawai‘i Care Choices.
It felt homey. I felt welcomed and loved and they had all these baby things for him. They had a brown bear blanket and a boppie pillow. There were baby shampoos and things to swaddle him in and keep him comfortable. I was thinking - these people don’t know us, but they took so much care in placing these things for a baby, that it felt like they anticipated everything. There was an instant connection with his care team and they were full of Aloha.
It was peaceful. And for the first time in hours, Taite felt comfortable and fell asleep. It was the second time I felt that strangers in our village came out to help. I knew I made the right decision to come home.
For the rest of Taite’s life they would be a huge, huge impact.
Hawai‘i Care Choices helped me be the very best mom to Taite.
They supported me. They were there to answer all of my questions. As a second time mom, but with the new territory we were in with Taite, they never made me feel dumb or like I didn’t know how to be a mom. They were so loving and caring and explained everything so well.
Getting the hospice services was a little strange because it wasn’t like they handed us a menu of offerings and we could pick and choose what we needed. It was whatever we needed. They made it happen. In one of the meetings when they would constantly ask “what do you need” I said back jokingly “I just want somebody to fold my clothes.”
“Ok we’ll get that for you.”
I still remember that wonderful, wonderful volunteer that would come over and she would fold clothes, and she would vacuum for me. In the few hours she was there each week she saw how demanding Taite was on our time, much more so than my first kid was at the same age.
This volunteer was another stranger in our community. She barely knew me, but she knew my clothes intimately. But because of her help, I actually got take the time to breastfeed my son.
When babies are breastfeeding they generally don’t focus on anything other than feeding. But I remember one moment where Taite looked up and deep into my eyes. He reached out his tiny little hand and placed it on my cheek. It was a beautiful moment as if he was telling me “everything’s going to be alright momma. I love you.”
Then a while later the social worker comes out and asks again “what do you need?” And I really wanted to get out of the house, if even for just a moment.
Hawai‘i Care Choices not only set up the volunteers to come to my house and help, but they also set up weekly respite care for me.
My friends and family would often say that they could watch Taite, but they didn’t understand all of the medical necessities it took to take care of him. So once a week, for a few hours I was able place my son in the loving embrace of the care team at Hawai‘i Care Choices so that I could focus on being a mom to my other kids, or a wife to my husband, or a daughter to my parents.
Caring for somebody with such special circumstances is so tiring, and taxing, and emotionally exhausting. As any new parent knows, caring for a baby is hard, and with the medical prognosis, it multiplied how challenging it was.
Taite was happy though and he knew he was loved. And that was because we had the support of this great program.
The nurses took care of him for an afternoon every Friday, and they set up a volunteer to be with him one-on-one the whole time so he was never alone. I was so, so thankful for them for doing that for me.
I think that Taite actually enjoyed going to Pōhai Mālama too! It was like playtime for him. He got to be surrounded by a whole new group of people that weren’t me. The staff and volunteers loved Taite and he loved them.
Taite had such a huge personality. He was really beyond his years. The way he would look at you. It was like he was looking at your soul with those big brown eyes. It was a special moment between me and him. He did it with his nurses. And my family, and his sisters. He had this special connection with everyone.
I remember when he got to the age where he could eat table food. He would whine when I would try and feed him peas and carrots. I thought there must be something wrong with how his body is trying to process these foods. After lots of conversations with the nurses we eventually took him out to a restaurant with us.
Dessert time comes around and I’m having a bowl of ice cream. And he is staring at it for the longest time. He’s transfixed on this ice cream. He’s watching it go from the bowl - to the spoon - to my mouth. He’s reaching out for it. And I thought - I wouldn’t normally give a baby ice cream, but Taite is special and he can have a little bit. He grabbed that spoon and shoved it deep in his mouth, his eyes got so big, and he wouldn’t let go of the spoon.
Oh! You just don’t like peas and carrots and canned chicken! The whole table had a wonderful laugh over that, and Taite was all smiles.
That was a wonderful memory that my family and I will get to cherish forever. Those are the little moments that I carry with me. It was being in Hawai‘i Care Choices that made moments like that possible.
Being in a hospital you don’t have many choices, it’s what the doctor says you’re gonna do, you’re gonna do.
Because of Hawai‘i Care Choices, Taite had choices. When I said that Taite didn’t need to have his blood drawn every week, they said “ok.” And when I said that every once in a while I was going to let Taite enjoy a Braddah Pop - even though it’s not on a baby’s standard diet, they said “go for it, let him enjoy life.”
The community at Hawai‘i Care Choices was amazing. They made me feel supported in this journey that I had. I knew there was somebody I could talk to. Somebody that would answer my questions. I knew that there was somebody who could empathize with me.
Every day I think about the love and support I got from Hawai‘i Care Choices and our community. I was supported, Taite was support, my husband and children were supported.
You can’t pour from an empty cup.
I was able to love fully for the 9 months and 20 days that Taite was alive because of the community that came out to support me through Hawai‘i Care Choices. I will be forever grateful, and even though I may not know all of you, this community will always have a special place in my heart.