The fear that Frieda could suddenly die, is still there. Sometimes the feeling of Yvonne M. assails abruptly, as on that cold December day in front of the school. On the football field, a rescue helicopter. Her voice is toneless: “What happened there?” But Frieda comes through the glass door, hooked up with a friend. As the girls remain for a moment and whisper, plops Frieda back to the ground. They dubbed it with a Laugh. Balance disorders? Development is lagging behind? Anyone who knows their history, is asking the. But maybe it was only the heavy satchel, the crack to the earth. Friedas face is narrow, under the cap, sources curly blonde hair. “Who is it?” she asks and fixes her blue-green eyes on the Reporter. “You know, we have a visitor today,” says Yvonne. “Uncle Repp’s coming, too.” Who is that? Frieda: “That is the man who has made me healthy.”
In the living room at home, a rope ladder, Frieda immediately climbs. On shelves photos are from the first days of life of Frieda and her brother Kilian, who came seven hours in front of her to the world.
Frieda knows that she is the youngest premature baby in Europe?
Yvonne: No. But she knows that she is something Special. The other day, she discovered a photo in the local newspaper. We have explained that the article is not about you but about your doctor, Reinald Repp. Of course, you know that you have to come early to the world.
Frieda at the age of two years
And you know what that means?
We conceal nothing, were often with her in the neonatal unit. There she saw babies with shimmering skin and breathing hose to the face. We have explained to her that had unfolded in her lungs and she had to be artificially ventilated.
How to find you?
Frieda is very mellow, which amazed us again and again. Also when she sees pictures of herself at the time. As a friend said to her, you’re located in a glass case, she said, no, I was in an incubator. But of course, she now has more and more questions.
What Are The Questions?
If you often gepikst, if she has cried a lot. And asks you to Kilian. Once, at his grave, she wanted to know if he is still as small as it was then. I explained to her that there’s only his bones, he lives but in our soul and in heaven. Sometimes she’s mad at him, she then asks why the Kilian wanted to get out so soon, she wanted to stay in there.
Than on 7. November 2010, the call came, was the chief doctor of the children’s hospital of Fulda, Reinald Repp, just on the way back from a weekend visit. 33-Year-old with twins, pregnancy for 21 weeks and 5 days of early labor. “The parents want a maximum of therapy!”, the senior doctor said. “The twins can’t possibly survive. Did you tell them?” Repp asked. “Of course not! That no case is known …” “I’m coming. Go tell the others.”
Mr Repp, what is recommended by the guidelines for the treatment of extremely premature infants, such as Frieda and Kilian?
When babies are in the 23. Pregnancy coming week to the world, we should initiate only at the Express wish of the parents life-sustaining measures. About earlier still-Born it is, you’ll abandon the rule of initial resuscitation.
This has good reasons. Only six percent of the preterm infants in the 23. Week to survive, often with permanent disability.
Moment! Your Figures refer to babies who were born many years ago in the United States. In Germany, these survival rates are currently already at 16 per cent, if on a life-support treatment does not from the outset has been omitted.
But Frieda and Kilian came even earlier. It was not a large Venture, to intubate you?
Repp: We had no Alternative. In the car I had made up my mind to speak to the parents, but the birth was already in full swing.
A Test had already been shown at the age of two years, that Frieda had survived the early birth without disabilities
Yvonne: And we knew what we were getting into. We had the next week an appointment with a top doctor. I don’t know how we would have chosen then. Perhaps against life.
Repp: For me, this was a clear order. My first Chance to speak with the two of them, I had to Kilian’s birth.
And what did you say to them?
Repp: the decision you have made today, is not irreversible and we now need to see from day to day, as the babies develop. We must all remain open to revise the decision later and to Die is sometimes the better Option.
Yvonne: And you’ve got us Jonas* told, came at the Klinikum Fulda, a year earlier, only two pregnancy days older to the world and well-developed. This has made us the courage.
Repp: I wanted to also speak of the opportunities. Jonas was a key experience for me, and not the first. One can draw no clear boundaries, you are allowed to make the decision over life and death of preterm infants, not only to the week of pregnancy.
What is it, then?
Repp: The children are different. Plays an important role, for example, whether an infection is present or not. The prognosis is also a decisive factor, where the extremely premature infants come into the world. All perinatal centres of the highest level of care, send their results of treatment every year to an institution that evaluates and perinatalzentren.org published, there is provided an unusually high level of transparency.
Where is your clinic?
For many years we are among the centers with the highest survival rates and fewest complications – in cases such as Frieda are not covered at all, only early-born from the completed 24. Week included in the statistics.
You do something different than Others?
Each centre has its peculiarities. For example, the recent early with a high-frequency ventilation not ventilated device, the many. The machine will only pump small amounts of air in the lungs, 900 Times per Minute. There is evidence that the minimum spare pressure differences of the immature lungs.
They held it for possible that Frieda or Kilian survive, after you have both seen?
My first impression was better than expected. Both have developed up to the day of her birth well.
Frieda with Reinald Repp, chief doctor of the children’s hospital of Fulda. Your strong will have helped, he says. And the good team work in the hospital.
They had the same opportunities?
It’s hard to say, in the first three months so much Unpredictable can happen. Cheap was that we were both able to intubate successfully on the first attempt, which was the first big hurdle. Your brain has been supplied from the beginning with enough oxygen. Otherwise, Kilian’s were the beginning of conditions, and perhaps something worse. He arrived seven hours earlier than Frieda to the world, and in the 22. Week of pregnancy counts, each additional hour in the mother’s womb. In addition, he was able to an unfavorable Birth, he came along with the feet. Frieda head in a “lucky hood” …
Caul?
She was surrounded by the Membranes. In the middle ages, it was considered a good Omen. In fact, the lucky hood acts like an Airbag, it has protected Frieda during the Passage of the birth canal. Kilian was not the effusions after the birth, covered in blood, Frieda.
As Frieda was 20 days old, began to swell, their skin, and they increased rapidly. Repp diagnosed the life-threatening capillary leak syndrome. In Friedas body’s smallest veins had become porous. No therapy suggested. Repp finally came up with a drug that prohibits in – due to risk of thrombosis. The parents were in agreement. The drug worked almost immediately. Frieda was saved.
Yvonne, you are the Doctors blind?
What Alternative would we have had? Yes, my husband John has “entered early birth 21 weeks” in Google and nothing found, is that ever a child would have survived. After that, we have never looked back on the Internet. And you, Reinald, gave us the feeling that you make all the decisions, with us, will, we felt eye-to-eye with you, that was very important for us.
Repp: And for me, your confidence was important. The only way I felt free in my decisions.
But sometimes experimental …
Repp: For the treatment of extremely premature infants, there are few studies that would show us the way, what is right and what is wrong. Often we are faced with the choice to try something or to do nothing, which would mean the probable death. We must rely on our clinical experience.
When you realize that all the effort is pointless?
If we see that we are deaf to the death, only delay, or the child will predictably remain severely disabled, and blind, and life-long ventilation. If we can, for example, the circuit in spite of the high adrenaline doses and 100-percent-oxygen-mechanical ventilation is only just stable.
How about Kilian?
When he was 22 days old he had one of the dreaded premature infants-complications: parts of his colon had died after a bacterial infection, a chair appeared in the abdominal cavity, the inflamed, his blood overacidified.h19060956_1081297693
In the late afternoon of the 18th century. December 2010 Yvonne broke down in tears in front of a nurse: “when did it our Kilian?” It was the Signal they had been waiting for since days. Reinald Repp came. The father came in. They discussed the Necessary. Then Repp shut off the supply of the acid buffer. Yvonne was allowed to take Killian in the Arm. The nurse turned off the light switch in the big room of the intensive care unit, where, in addition to Kilian and five other premature babies were lying in their incubator. Frieda was asleep. Only monitors and warning lights donated sparse light. Normally beeped somewhere an Alarm, but now it was silent for a long time. Yvonne had the feeling that all the little souls by Kilian adopted.
Why did Frieda survived?
Yvonne: Frieda is a fighter by nature. Today we experience on a daily basis, what a strong will she has. She decides whether she wants something or not, and it is almost impossible, you can still change your mind. And one more thing: Kilian, had almost always the eyes open, Frieda has almost always slept …
Repp: … it wasn’t a sign that you stand so strong under Stress, to assume, would have been. It had a good stability, in spite of the immature organs.
It was not, however, because they do things differently in Fulda?
Repp: No. It was critical that our team work was good – and it is. It is the nurses who notice first, if there are problems, give it to us, and we are considering what to do. The communication works for us.
Would have to change the guideline for preterm infants at the limit of viability?
Actually, it is already quite good, because it allows us a lot of room. In the Netherlands, or Switzerland, even premature babies in the 25. Week of pregnancy are not often kept alive, more than half of these children could be without a disability. However, our guideline is partially based on long-outdated American studies, in Germany, today we have much better long-term results. When Frieda came to the world, there were, nationwide, barely surviving premature infants from 23. Week of pregnancy, in the year 2017 there were 30. The boundaries are blurred, which should take account of the recommendations of the invoice.
Has Frieda worn disabled?
Yvonne: she has minor motor deficits that we see, when she dances, and she dances very fond of. It is very small, below the normal range.
Repp: So how many born early. Soon you should decide whether you could help the release of growth hormone.
And mentally?
Yvonne: Because she always surprises us. In school, she has no problems with the services, during the last three school tasks in English and Arithmetic, she had taken a half of the error. But she distracts the other children from the school and must sit for the penalty in the first Bank.
Expect Frieda makes no difficulties. It has developed quite normal.
She has ADHD, the fidgeting Philipp syndrome?
Repp: I don’t think so. Although this occurs in premature infants more frequently, but Frieda can concentrate for a very long time on a task …
Yvonne: For example, if you paint one of your favorite pastimes … (Yvonne brings a thick folder with abgehefteten colourful images.)
Suns, flowers, animals, hearts, smiling faces. If you wanted to interpret, it seems that you have to keep a mental Trauma.
Yvonne: there are no signs and there were never. She is always cheerful, she seldom cries, she has a lot of Girlfriends. We have really great luck and look forward every day to your.
Join Frieda still medically, Mr Repp?
Repp: not Really, unless it’s an urgent question. I can turn off my doctor’s view quite wonderful, if I sit here among friends, I can be happy just the same to you and wonder how your parents.
*Name changed by the editors
