A fight for survival from the very start: Babies born far too soon. The long-term effects of premature births are often be underestimated.
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00:00These people have each won a battle, the battle for their lives.
00:06All of them were born early, much too early.
00:09Amina's mother faced a severe infection midway through her pregnancy.
00:14The infection threatened her life, mine as well.
00:17They decided in the end to perform a C-section in the 26th week.
00:22At birth, Diego, now 11 years old, weighed just 515 grams.
00:28I just cried, most of all because I couldn't even get close to my baby.
00:33And then there's Lukas. His survival was something of a medical miracle.
00:38Ever since, nothing has been easy.
00:42This year I had my first ever vacation on my own.
00:46Their fight for a self-determined life continues.
00:50Are you ever done with being a preemie?
00:53It never stops. I tell mothers to put on their battle gear and never take it off.
00:59It never ends.
01:13Things are out of joint.
01:16Hi, my little one. Hi.
01:19Mama's here. Yes.
01:24Amina is already with us, arriving three months too early.
01:28Her world, the neonatal ICU of University Hospital Essen in western Germany.
01:35My little fighter.
01:37Amina's mother spends hour after hour by her incubator,
01:41giving her daughter as much physical contact as she can.
01:45You're doing so well.
01:48It's critical for the baby that mother and staff
01:51replicate the proximity of the womb as much as possible.
01:55The labor came as a big surprise to me.
01:59She was born too early, in the 26th week of pregnancy.
02:04I had premature contractions and was taken straight to the hospital.
02:09The doctors examined me in the delivery room, and then my water broke.
02:16Jamila had little time to deliberate.
02:19Her third child was born far too early.
02:22An emergency C-section, intensive care.
02:26The full procedure for what are called extreme preemies, short for premature.
02:33For the next three months, a hospital discharge is out of the question.
02:38Even after that, the challenges are far from over.
02:46I've been told I have a long road ahead of me.
02:49Even after she comes home, there'll be more tests.
02:52Throughout her early years, up until school age,
02:55she'll need regular monitoring to check for any possible impairments,
02:59or if she needs any kind of extra therapy.
03:05But what is a preemie?
03:08Babies born more than three weeks early are considered premature.
03:12According to the WHO, worldwide there are 13 million premature births each year.
03:18In Germany, roughly 1 in 11 newborns fall into the category.
03:23Outcomes can vary greatly.
03:27Lukas Mader says you're a preemie for life.
03:31He's 27 and lives near Munich.
03:34The effects of his extremely premature birth are visible,
03:38but Lukas refuses to let them define him.
03:44He trains and trains hard.
03:48Several times a week, he pushes himself to the limit.
03:58Training is especially important to me to combat the effects of cerebral palsy,
04:03which I live with as a preemie, that is, spasticity.
04:06It strengthens my muscles, so I don't feel as stiff in daily life.
04:10I also build muscle to stay physically fit and boost my self-esteem, too, of course.
04:16That I've gotten more fit so far hasn't had much of an impact when it comes to women,
04:21but maybe that's still on the way.
04:26At birth, it was a matter of life and death.
04:30Lukas' mother was expecting twins when she developed a severe pregnancy complication
04:35and could no longer carry them to term.
04:41My husband was told they didn't know if any of the three of us would survive,
04:45and they'd inform him when they knew.
04:48Lena weighed 290 grams, at the time the smallest preemie in Germany to survive birth,
04:53and Lukas weighed 515 grams.
04:56He was more stable, but still not in the clear.
04:59After three days, they knew I would survive, but it took longer for the children.
05:04Our daughter Lena passed away from a severe brain hemorrhage after one week.
05:09With our Lukas, they only knew after three or four weeks that he would make it,
05:13but not what the long-term consequences would be.
05:17Adding to her burden, the hospital made it almost impossible for her to bond with her baby,
05:23standard practice at the time.
05:27It was almost two months before I was allowed to hold Lukas for the first time.
05:31I knew the night nurses had already taken him out to cuddle him,
05:34but I, as his mother, was only allowed weeks later.
05:43It was a sign to me that I wasn't welcome.
05:46You're just a visitor, but the baby belongs to the clinic.
05:51In the past, it was considered a success for a preemie to survive at all.
05:56Researchers considered the quality of life after that a secondary matter.
06:00It took a long time for hospitals to realize how crucial physical contact is.
06:05The drama of his birth and its consequences, for Lukas, it's still a strange story.
06:16It took a very, very long time to really understand it.
06:22That's because I didn't want to actively deal with it.
06:26For me, it was always a negative story.
06:29I avoided looking at it.
06:33When we finally got home, we thought everything was fine,
06:36but that was just the beginning for all of us.
06:40When he was two, he wasn't walking.
06:42He wasn't even crawling, he was just rolling.
06:45The neurologist would always say,
06:47well, he's a preemie, he'll grow out of it.
06:49That was the stock phrase we heard for weeks and months.
06:53They don't grow out of it.
06:55It's a phrase Britta Höning, head of pediatric discharge management in Essen,
07:00never wants to hear again.
07:04Prematurity has impacts across an entire life.
07:08Even as adults, many preemies live with neurological problems.
07:12They may face paralysis, struggle with sight or hearing,
07:16or endure frequent respiratory illnesses.
07:25To start from the beginning.
07:28In the neonatal intensive care unit, it's initially all about survival.
07:32Breathing is critical.
07:35Medicines that allow extremely premature babies to breathe
07:38have only been available for 40 years.
07:41Prior to that, children like Amina wouldn't have stood a chance.
07:46Very premature babies born in the sixth month
07:48have an average survival rate of 60%.
07:52I think she's so adorable now.
07:54She's not an alien baby.
07:59She has a pretty face, beautiful hair,
08:01a lovely body and a beautiful skin tone.
08:03Just incredible.
08:07Even her first touch, very cautious,
08:09just barely touching my hand, was like,
08:11okay, everything's fine.
08:14What's your greeting ritual?
08:16I put my hand gently on her back and say,
08:18good morning, Amina. Mom is here.
08:20What happens though when the machines set off an alarm for Amina?
08:25The hiccups again. A break in breathing.
08:31Then you massage the chest a little,
08:33just to remind her that breathing is part of it.
08:37Right now the priority is for Amina to grow and learn a few things.
08:41Breathing would be a good start.
08:45Breathing would be good.
08:48She does tend to forget sometimes.
08:51Exactly. It's just that her brain still isn't fully developed.
08:54That pacemaker that says, take a breath,
08:56it's just not fully matured yet.
08:59It's all about Amina's survival right now.
09:01And yet the two women are talking casually.
09:03Panic won't help anyone.
09:05The doctor offers reassurances and explanations.
09:10When we look at 20 weeks, the brain is almost smooth.
09:14There aren't even any folds yet.
09:17You can really see how much the brain develops in the last third of pregnancy.
09:21And this development has to happen while the preemies are in our unit.
09:26Amina was born four weeks after this smooth brain stage.
09:29And if we looked at her ultrasound images,
09:32we'd just be seeing the beginning of cortical folding.
09:39And when everything goes well,
09:42And when everything goes well,
09:44meet Diego.
09:46Only around a third of children born as early as he was
09:49grow up without experiencing any long-term effects.
09:54For his mother, he's a little miracle.
10:00When he was born so small, we never thought he'd develop this well.
10:04Absolutely. We are very proud.
10:07Today, despite his poor initial prognosis,
10:10Diego is an active teenager.
10:12Born three and a half months prematurely
10:14and weighing just 580 grams at birth,
10:17he endured three months of intensive care.
10:20His mother lived with permanent uncertainty.
10:25I was crying all day, from morning to night.
10:28I just cried.
10:29Especially because I couldn't even be near my baby.
10:32He was wrapped up in this incubator.
10:34You really had to search to find him.
10:37Thousands of cables and needles, oxygen tubes,
10:40and then this little black thing, as I always said.
10:44His eyes weren't open yet, and he didn't even have nipples.
10:51And then a nurse came to me and said,
10:53Congratulations, this is your son.
10:55I looked inside and he was in what I always call a bubble,
10:59as if he was covered in plastic wrap.
11:02I couldn't recognize anything.
11:04The nurse said, You can touch him.
11:06But I didn't dare.
11:08That was my first moment.
11:10I went back to my wife and she asked,
11:12What does he look like? Is he cute?
11:14I said, Yes, he's cute.
11:19You have these expectations.
11:21Does he have your eyes or my nose?
11:23But of course he didn't have any of that yet.
11:26You're really afraid to touch him.
11:28You don't want to hurt him or break anything.
11:30He was just so small.
11:32Looking at the pictures now, what do you think?
11:37At first glance, is that even me?
11:41It's just crazy.
11:46My parents always tell me I could fit into the palm of a hand.
11:51And that feels somehow weird, but also kind of amazing.
11:57He's doing well in school, and for his best friend Jan,
12:00it doesn't matter at all that Diego was a preemie.
12:08I've known Diego for, I think, five years now.
12:13Since first grade in school.
12:15Elementary school, yes.
12:18Diego's a really nice guy.
12:20He's just like anybody else.
12:25The family's certain.
12:26It's thanks to the doctors at the clinic,
12:28which, unlike in the 90s when Lukas was born,
12:30catered to the needs of preemies.
12:36We are very, very grateful for all the help
12:38and excellent medical care during his stay and afterward.
12:44His fighting spirit, of course, too.
12:47If he hadn't wanted to live at 580 grams,
12:50he wouldn't be where he is today.
12:52That needs to be said.
12:55So, no longer term effects?
12:57Perhaps not for Diego, but for his parents.
13:01Diego's now 11, doing his own thing.
13:04That's hard for them.
13:08We're just so emotionally attached.
13:12He's still my little preemie somehow.
13:16When other kids are on the playground, it's fine,
13:20but I always feel like I need to watch him even more closely.
13:24It's just something in my head.
13:28Everything comes a little later.
13:30For Lukas in Munich, that's true to this day.
13:37This year, for the first time ever,
13:39I went on vacation completely on my own.
13:43To Lake Chiemsee.
13:45I booked my own hotel and travelled alone with just a backpack.
13:48That's a big milestone for me,
13:50and I'm proud and happy about it.
13:53I had three or four days on my own at the lake,
13:56at the horse festival.
13:57I'll not forget that as long as I live.
14:02All that in his mid-twenties,
14:04which is not uncommon among preemies.
14:09I was never really one for the big school parties,
14:11the social groups, the cool kids, as they say.
14:15I was the one sitting home alone on Friday nights,
14:17not going to parties.
14:21I didn't drink alcohol because I didn't like it,
14:23and I didn't smoke because of my preemie lungs.
14:26It meant I was always an outcast.
14:30There were challenges with teachers and educators, too.
14:37In kindergarten, they recommended he go to a special needs school.
14:40They said he couldn't handle a regular school
14:42and said we'd be overwhelming Lukas.
14:45We really had to fight,
14:46even when he later moved from elementary school to high school.
14:49Educators and teachers still lack understanding
14:52of these children's special needs.
14:56When you consider that, statistically,
14:58two out of 25 children in a class are preemies,
15:02we need to be doing much more to raise awareness.
15:09I believe that without our determination,
15:11he might have ended up in a workshop for people with disabilities,
15:14even though he has an IQ of over 180.
15:16With good support and his fighting nature, though,
15:18Lukas wound up at university,
15:20enrolled in empirical cultural studies.
15:23He completed his master's degree with top grades.
15:26Now Lukas has set his sights on a Ph.D.,
15:29studying the relationship between humans and big cats.
15:33This means he's off to Kenya.
15:36His former professor, Irina Goetz,
15:38is confident he'll achieve his goals.
15:41Yes, of course, because he knows what he wants.
15:44I mean, it's definitely harder for him.
15:46He'll need physical support to go to Africa.
15:49He'll certainly also have to put in more effort with some things.
15:53It's apparent when he's writing.
15:56While we might jot something down quickly,
15:58he thinks it through longer.
16:01Sometimes that's an advantage.
16:04It could mean he's more confident.
16:07It's especially challenging as a preemie,
16:09because I need support.
16:11I can't just go to Africa alone without assistance.
16:15I need someone to carry my luggage,
16:17someone to drive the jeep,
16:19and sometimes even a translator.
16:22I simply need someone who can help me deal with
16:24the physical demands of months of travel.
16:27That's all I need.
16:30I need someone who can help me
16:32deal with the physical demands of months of travel.
16:34That's the biggest challenge that comes with being a preemie.
16:40Lukas knows that being able to undertake
16:42such a journey is a privilege.
16:45In other parts of the world,
16:47many preemies still aren't getting a good start in life.
16:51His mother Silke has made it her mission to change that.
16:5525 years ago, she began volunteering,
16:58at first locally, then across Germany and Europe.
17:01She plans to advocate globally for preemies
17:04and their families in the future.
17:08The foundation with this as its aim already exists.
17:16At the moment, we're collaborating
17:18with many professional associations,
17:20more than 90 experts,
17:22the WHO and even pediatric associations in India.
17:26We're still working on packages
17:28but we also have connections in China,
17:30Japan, Australia, New Zealand,
17:33many countries in Africa, South America
17:36and of course the usual Western countries.
17:40We don't currently know the global situation,
17:43how many premature births there are worldwide.
17:49Back at the university hospital.
17:53Hello, my little one.
17:56Hello, my little one. Mama's here.
17:59Amina has something to celebrate.
18:03So, here we've got a little balloon for Amina
18:06because today she weighs over one kilo.
18:091050 grams.
18:11Super, my little one. Amazing.
18:14We'll attach it to the crib
18:16so she always has a nice view of it.
18:18Thank you so much. We did it.
18:22That's the first step.
18:24Very nice. Thank you. That's so kind of you.
18:28This milestone of surpassing a kilo is really incredible.
18:31It makes me so proud as a mother.
18:33Just unbelievable. Beautiful.
18:37For Amina, this is just the beginning.
18:39It remains unclear how much of this
18:41will impact her life.
18:43But the care she received in ICU
18:45provided an ideal start.
18:49You're doing amazing, my darling.
18:51Mama is so proud of you.
18:53Yes, so proud.
18:56Always keep going, my sweetheart.