Ronald McDonald House
Waiting For Koamalu
July 6, 2012
By Gene Davis
ade Iaukea–Shimizu and Les Huihui are hoping that any day now the doctors at Kapiolani Hospital will tell them the date has been set to transfer their infant son Koamalu to Seattle Children’s Hospital in preparation for his life–saving double transplant. For now, their life mostly consists of long hours at the hospital followed by anxious nights huddled together with Koamalu’s twin brother Hayden at the nearby Ronald McDonald House.
It has been a rocky road so far for Koamalu, who was born nearly two months prematurely on April 7, with what is called “short gut syndrome.” He was born with only ten percent functioning intestines. His liver is expected to fail soon as well.
Koamalu’s twin brother Hayden overcame the prematurity quickly, and other than a brief heart murmur, has been developing well. When he was able to leave the hospital, he joined mom and dad at the Ronald McDonald House to wait for Koamalu. A year ago, back in Kailua–Kona, neither Jade, 18, nor Les, 22, could have ever imagined where they would be now and what they would be doing. The sudden change in their lives began the day Jade found out that she was expecting. Les remembers the day well. “I was working, and Jade came by to tell me that she was pregnant,” he recalls. “We were both scared. We didn’t know who to tell. We didn’t even know what to do next. I had never even baby sat before.”
Then came a double–shocker. They learned that Jade was expecting twins. When the shock subsided, they found that they eagerly looked forward to the future together with their babies.
But it started to get complicated about 20 weeks into Jade’s pregnancy. “The doctor told us that one of the twins (Koamalu) had a fluid build up in his abdomen,” says Les. “He gave him a 20 percent chance to make it, and he gave his brother Hayden a 50 percent chance to survive. He said that if Koamalu would pass, then Hayden would probably pass with him. In the ultrasound, we could see that their umbilical cords were getting tangled up.” Les began researching on the internet and learned that there was a specialist in Los Angeles that might be able to help. He was fascinated when he watched a YouTube video of the doctor performing a procedure on unborn twins to give each their own flow of blood.
Doctors here couldn’t be sure if the twins actually were suffering from twin–to–twin transfusion Syndrome, but the young couple wanted to take the chance, and give their sons the best opportunity to survive. As Les says, “These babies are our blessing, so we needed do anything and everything we could to help them.” They flew to Los Angeles and the doctor was able to perform the operation the very next morning.
When the couple returned to Kona, they were told that now Jade had to go to Kapiolani Medical Center because her pregnancy was very fragile, and she was immediately flown over to Oahu. Meanwhile, at first, Les tried staying in Kona to work because he had used all his time off taking Jade to California for her operation and didn’t want to lose his job. But he was increasingly anxious about what was happening to Jade and the unborn twins over in Honolulu, so he made the decision to come and be with them. “It was a good job, but I know I did the right thing,” Les affirms.
After a total of 46 days of bed rest, Jade gave birth to Koamalu and Hayden by caesarian section on April 7, nearly two months premature. Hayden came out first and he had his heart murmur, which went away after a few days, and Koamalu was born with a curvature of the spine, which is something doctors said, could be corrected down the road. But there was more that needed to be done for Koamalu. “The second he came out, they started draining the fluid that had built up in him,” Les says.
Hayden was soon well on his way to good health, but doctors watched Koamalu carefully to see how he was progressing. When his bowels didn’t appear to be working properly, they ran a diagnostic test to find out why, and then during it, they discovered the undeveloped intestines. “So the doctor had to use what was left, and connect him up as best he could,” tells Les. “But that wasn’t enough intestines left for him to survive. So he would ultimately need a transplant to save his life. That was so hard for us to hear. I thought I was having a bad dream.”
So right now, it’s a waiting game for Les and Jade. They are waiting for the ok from doctors to head up to the mainland with Koamalu for his intestine–liver transplant. But the doctors themselves are waiting for Koamalu to grow strong enough to be ready for it. It’s a frustrating day–to–day situation that has been going on for some time, but Les and Jade remain steadfast and optimistic. And they have a stable temporary living arrangement and safety net. “We weren’t sure what we were going to do after the twins were born,” says Jade. “One of our neighbors had a preemie and they stayed at the Ronald McDonald House, and they were telling us about it. So when the time came we asked the hospital about the Ronald McDonald House, and before we knew it, we had a place to stay. Not just any place either, a wonderful place. We really enjoy being here. We made so many friends.”
“If not for Ronald McDonald House, sadly, we would have had to go home and be miserable without our babies. That just wouldn’t be right because you need to be near your child in the hospital,” adds Les.
The couple’s situation has had a profound effect on them. “At first I wondered why God gave us sick babies, Les says. “Was he punishing us? But before long I realized that God gave them to us because he knew that willingly, we will do everything we can for them. I am so happy these babies came into our life. We didn’t realize it before, but we really weren’t complete until our boys got here.”
“I’m still scared,” says Jade. “But I’m excited. I mean, it’s tiring but it’s not hard. I really enjoy having them around.”
“I know I will find a way to take good care of my family,” concludes Les. “As my dad used to tell me, ‘The road to success is always under construction.’ There might be detours and it might get bumpy. Some people might pass you along the way. That doesn’t mean that, at the end of the road, you’re not going to get to your destination.” §
Note: As this story was going to print, the good news came that Koamalu was ready to travel, and he and his family were whisked away to Seattle on July 7, where Koamalu is being further evaluated prior to receiving his double transplant. All of us at Ronald McDonald House send Les, Jade, Hayden and, of course, Koamalu our best wishes and highest hopes for success! You are in our prayers.