That’s the word Dr. Jonathan M. Klein, Medical Director of NICU, used to describe the one-year birthday celebrations of Keeley and Kambry Ewoldt, the world's most premature twins.
On 24 November 2018, the Ewoldt twins were born at the University of Iowa Hospitals & Clinics in Iowa City, Iowa, at a gestational age of 22 weeks 1 day, or 155 days. The girls were 125 days premature.
At birth, Keeley (Twin A) weighed 490 g (1 lb 1.3 oz) and Kambry (Twin B) weighed 379 g (13.4 oz). Their bodies gelatinous and fragile, one could barely see their finger and toenails without a magnifying glass.
Babies born at 22 weeks are at the threshold of viability, and in the United States, their survival rate in that range is just 14%.
With the on-going care provided by Dr. Klein, several NICU nurses and medical staff at the University of Iowa Stead Family Children's Hospital, the twins continue to show great progress.
"They are doing great," proudly exclaimed the twins’ mother, Jade Ewoldt. "Being at home, they are becoming more like four-six-month-old babies."
Jade continued: "They are on oxygen. It’s pretty common for children born within 22-24 weeks stay on oxygen for up to two years. They ween the oxygen down as the baby gets older and stronger and capable of breathing on their own air a lot more.
"They are really happy babies, they have a 4-year-old sister (Kollins) and 6-year-old brother (Koy) who are teaching them all the right and wrong things. It stays pretty busy around here."
Keeley and Kambry may be twins, but Jade explains how they are night and day different from each other.
"Kambry is fussy and funny. She is the sicker one. So, she’s allowed to be fussy. She knows she can be fussy and naughty and then she’s really happy right after. Keeley is kind of our spit fire. She doesn’t say much but she supports Kambry.
"Keeley will be the one who gets the girls somewhere and Kambry will be the one to tell them how to get there."
Like most younger siblings, they get a kick out of watching their older brother and sister. They are currently loving to roll around and jumping everywhere. The family says the twins are the cuddliest babies.
"They are just really happy babies," said Jade. "Their smile just lights up the room. You can tell a baby who knows that they are loved and Keeley and Kambry know that without a doubt that they are loved immensely."
November will always be a special month for the Ewoldt’s as they celebrate the twins' birthday, but ironically, it's also Prematurity Awareness Month – a time to call attention to the one in 10 babies born too soon in the U.S. each year according to March of Dimes. The organisation, which fights for the health of all mothers and babies, says the prematurity rate in the U.S. has increased for the fourth year in a row, and is working with researchers, policymakers, community leaders and families to prevent and solve this urgent health crisis.
Holding the Guinness World Records title for most premature twins can be a sensitive subject in celebrating a milestone associated with such dire implications. However, the Ewoldt's are using the title as a badge of honour, carrying the premature community of families on their backs and taking the responsibility of creating awareness.
"I know just sharing the girl’s story has already helped other people," explained Jade. "For me, I love advocating. I’m never going to stop. And just to reach more people. Even through this platform just means so much to me personally. I’m just so grateful to have such a large platform to share their story.
"The world is so uneducated on the survival of babies being born this early and how they can go on to be intelligent and capable of so much. I’m really excited to share this to help others save their babies."
Along with Jade, Dr. Klein and the entire medical staff support and push for awareness around the topic each day.
"We want to try and reduce the number of babies that are born prematurely," said Dr. Klein. "There are things that we know can help: not smoking, getting good prenatal care so that you don’t develop high blood pressure, but sometimes even with the best intentions, there is still unfortunately going to be babies born premature.”
Some things, like chronic health conditions, may make you more likely than others to have preterm labor and premature birth. That’s why getting early and regular prenatal care is so important. Being healthy before pregnancy can help to reduce the chances of complications during your pregnancy.
Dr. Klein continued: "We know that there are only 2,000 22-weekers in the U.S. out of 4 million births each year that are born alive at that threshold. The national average would be 14% surviving and 86% dying, so it’s pretty miraculous. I think it’s the hard work, the key is the team. The nurses here are just an amazing team."
One of those nurses, Kristin Hagberg, who has treated the twins since the very beginning echoes Jade and Dr. Klein’s passion for creating awareness.
"As these delicate babies fight for their lives, so do we by working diligently and passionately right beside them every single step of the way. Through all of the ups and downs. I want families to know there is an abundance of support and you are not alone.
"All of these babies are our future and who knows what kind of mark (or record) they will leave on the world, all because of improving viability, raising awareness, and doing everything in our power to provide the best outcomes for our patients."
Kristin and Dr. Klein are part of an incredible medical team at the University of Iowa Hospitals & Clinics in Iowa City. The hospital has become widely recognized on a national level for their success in treating premature births. Nearly 60% of children born at Iowa within the same time frame as the twins survive and the Ewoldt’s feel fortunate to have had such a resource in their backyard.
"I wish I could even put it into words. Honestly, I’ve tried to tell them this many times," explained Jade.
"I just can’t imagine Keeley and Kambry not being here. You know, the excitement that you have when you’re pregnant. The build-up and anticipation of having your baby and getting to meet them and naming them. I really couldn’t imagine having it any other way, and without them, this team in Iowa City, is like no other hospital."
Jade continued: "We have really high success rates. Dr. Klein teaches the world on saving 22-week old babies and we are just really lucky that they (the hospital) are basically a neighbor to us and that we were able to go there and be cared to by them."
"I have a lot of friends from the NICU that are nurses. They just got me through some of the hardest days and I don’t know if I could have done it without them."
Although the twins will officially turn one on 24 November, some families like the Ewoldt's plan to also celebrate their birthday on their original due date. Keeley and Kambry’s due date was on 29 March 2019.
Because of their fragile immune systems and an increased risk with having visitors, the Ewoldt’s plan to celebrate at home on 24 November with the twins and their children. Then sometime in spring when everyone is healthy outside of RSV (respiratory syncytial virus) season, there will be a big party with close friends and family. There will no doubt be plenty of emotions and reflection one year from the day the twins entered this world.
"To see them look like regular babies many months later is pretty amazing," said Dr. Klein. "So, every time I see them in clinic, I always tend to be surprised every time to see how wonderful they are doing."
"These premature babies are little warriors who often remind me of my own strength. If they can survive these outcomes than surely I can or anyone can do anything they set their mind to," nurse Kristin Hagberg.
Jade concluded: "I keep thinking about back then, the moment when my water broke. Just thinking about the days even leading up to my water breaking. I could have never anticipated it. And there was so much fear going on in my mind after my water broke and even just the first few days of their life … it’s tough … reflecting back on what they looked like and being told that they could even be still born and die.
"It’s really just a work of God that they are even here because there is so much that they’ve defied to be here. They are 100% the toughest people I know. Many adults couldn’t do what they have done. There’s just so many emotions.
"They have fought and we have fought alongside them and they are here and we get to celebrate even more and kiss and love on them as much as we can.”