Identical twins Kambry and Keeley Ewoldt (USA) have been defying the odds since they took their very first breath.
The tiny twins, who were born at the University of Iowa Hospitals & Clinics in Iowa City, Iowa, USA, on 24 November 2018, hold the record for the world’s most premature twins.
But unlike many record-breaking achievements, this wasn’t a record title the Ewoldt family voluntarily sought out.
Originally due on 29 March 2019, the twins unexpectedly arrived 125 days early. When they entered the world at a mere gestational age of 22 weeks 1 day, or 155 days, the cards were already stacked against them.
"It had been roughly over 24 hours after my water broke that I delivered the girls," said the twins’ mother, Jade Ewoldt.
"The risks that I knew were there of losing them were high, so I was fully preparing myself for what was going to happen next."
Keeley (Twin A) weighed 490 grams (1 pound 1.3 ounces) and Kambry (Twin B) weighed 449 grams (15.8 ounces).
"I was 16 weeks pregnant when I went to one of my doctor’s appointments and found out the girls had twin to twin transfusion syndrome," said Jade.
Twin to twin transfusion syndrome (TTTS) is a serious disorder that occurs in identical twins and higher-order multiples who share a placenta.
When the blood vessels of the babies’ shared placenta are connected, one baby (the recipient) receives more blood flow, while the other baby (the donor), receives too little.
"Essentially what is happening in TTTS is both babies are getting sick," said Jade.
"One baby is getting smaller and sicker while one baby is getting bigger and sicker. It can actually lead to the demise of one twin or both twins."
Luckily for the little ladies, University of Iowa Hospitals & Clinics has a level IV NICU—the highest level of neonatal care.
"Normal pregnancy goes to 40 weeks. Most places throughout the United States and the world feel that babies that are born before 24 weeks gestation really have a minimal chance of surviving," said Dr. Jonathan M. Klein, a neonatologist and NICU medical director at University of Iowa Stead Family Children’s Hospital.
"At the University of Iowa, since 2006, we have been caring very successfully for babies born as early as 22 weeks, which is 18 weeks before their due date."
At 22 weeks gestation, a baby’s eyelids are still shut, and their nervous system is developing and sharpening their senses.
Before they were even born, Jade knew their outlook was grim and that the possibility of her girls surviving was very low.
"I was already given what the future could hold for them," she said.
"Things like cerebral palsy, autism and severe disability were things that they have to share with you as parents so that you could make the choice best for you and your family."
Although health care professionals knew the Ewoldt preemies would be faced with a long road to recovery, they remained hopeful.
"When caring for babies that are in a peri viable state, it’s important not to label them as an extremely premature baby who has no chance of survival," said Dr. Klein.
"We look at a 22-week baby no different than a critically ill adult. We expect these babies to survive, we expect them to do well, we expect them to thrive." - Dr. Jonathan M. Klein, NICU medical director at University of Iowa Stead Family Children’s Hospital
Stead Family Children’s Hospital neonatologist Dr. Timothy G. Elgin said their team of neonatal health care professionals braced themselves for the twins’ arrival.
Two different resuscitation teams comprised of neonatal nurses, a neonatal fellow, and a neonatal transport team were present during their birth to allocate ample attention to each twin.
"As one was born, we were able to intubate, put a breathing tube in, ensure that they had adequate heart rate and that they were at proper temperature before we brought them back to the NICU," said Dr. Elgin.
Jade remembers the emotional day her miracle duo was welcomed into the world.
"Immediately after Keeley was born, the NICU team was already in the room, prepared and ready. She was in such a critical state, they had to take her right to the NICU," she said.
"And as she was leaving the room and I was saying goodbye to her, Kambry was born. She was resuscitated and taken to the NICU."
For the next five months, Jade split her life between her two older children at home, Koy and Kollins, and the Stead Family Children’s Hospital.
Until the day her infants were discharged, she made a two-hour round-trip commute nearly every day to spend time with them.
But the girls’ struggles didn’t end once they left the hospital.
"When Keeley and Kambry first came home from the NICU in 2019, they were diagnosed with chronic lung disease and severe BPD (bronchopulmonary dysplasia), so it was a complete whirlwind because we immediately set up oxygen in our home and started with cords and tubes around our house," said Jade.
"We no longer had the support from the NICU staff. The very first day was really scary."
Although older literature suggests that babies born extremely early tend to be neurologically devastated, Dr. Klein mentioned that developing neuroprotective strategies and protecting their brains often leads to good outcomes.
"When we follow up with our babies born at 22 weeks, over two-thirds of them are completely normal, to very mild disabilities," he said.
As any mother would, Jade put her best foot forward and adapted her life to make sure her daughters had what they needed to grow strong.
Today, the Ewoldt sisters have grown up to be two tough twins and are just as happy as any other toddler.
"It’s really interesting that they are identical twins, and most would say that even at this age they don’t have noticeable differences, but they do. They’re completely different, individual people," said Jade.
"Keeley is very girly, and she gets scared of even a fuzzy toy. She’s just very dainty hearted."
Kambry, who lives with autism, brings just as much happiness and positivity to her family as her "big" sister.
"We love her because those traits are who she is. She is fearless. There’s nothing that stops that girl. She is just the ham of the room."
The tots began speaking a year and a half ago and although Kambry was largely non-verbal, the Ewoldts began teaching her sign language, which they still use today, to help her express herself.
"That was comforting to her to use the sign language, versus trying to use words. We’ve been very fortunate to have some different things in place to allow them to learn one on one," said Jade.
"They will go to pre-school this fall and I honestly think they’re going to be advanced for their class."
With their fourth birthday coming up in November, Jade looks back on the past three and a half years with admiration for Keeley and Kambry’s strength and resilience.
"They have done so much, and they’ve done more than they even know. I know if they can do all those crazy things, then I can definitely do all of it right alongside them," she said.
"It’s really tested my faith, but it’s made me stronger. You learn to appreciate life on simple levels that most people never get to experience in their life."
Jade now runs a non-profit organization, Keeley & Kambry's Tribe, that advocates to change fetal viability.