Operating Before Birth: Fetal Surgeon Thomas Kohl and the Families Who Seek Him Out

Vanessa lost her amniotic fluid in the 15th week of pregnancy. According to the film, most parents in such a situation opt for a termination or lose their child. For Vanessa and Stefan Langer, a termination was out of the question. Their reasoning: as long as the heart was beating, their daughter wanted to live and was fighting, and she had been doing so for many weeks. Their gynecologist was skeptical. The couple searched desperately for help and came across Thomas Kohl's phone number online. Vanessa describes the first phone call as encouraging. Kohl told her what she could do herself and advised her to relax so that her uterus would stay soft. That helped, she says.

At the time of the operation, Vanessa is in her 28th week. The biggest problem is the baby's lungs. If she were born now, they would probably be too small for her to survive. They still need to gain volume before birth. The procedure is considered complicated: the placenta and umbilical cord block the way, and the baby has been lying in a cramped position without amniotic fluid for weeks. Kohl stresses that the operation is taking place on uncertain ground. A premature birth could happen at any moment, even without anything the team does, for instance within the next few hours. They are walking a very fine line.

Kohl co-developed a technique for this situation. A tiny latex balloon is inserted through the baby's mouth into the windpipe. There it is filled with 0.6 milliliters of saline solution and inflates to a length of about two centimeters. Before birth, the baby does not need to breathe, so the windpipe can be closed off, Kohl explains. This builds up pressure, and the lungs grow and receive better blood flow. According to the film, even a few days can bring decisive progress.

Once the balloon is in place, it becomes a danger in itself. If it cannot be removed before birth, the baby will die after being born. Kohl describes how stressful this is for the whole team and for himself. As long as the balloon is in, ten to fifteen people go to bed every night with the child on their minds.

The operation takes longer than planned. In the end, the surgical goal is achieved, but now comes the nerve-racking part: ideally, the baby should stay in the womb for a while longer. You are playing with the devil, Kohl says in essence, and you certainly don't win every time. He tells a worried Stefan Langer that the starting situation was difficult, but the procedure itself went well. Stefan describes this period as a rollercoaster ride. Whenever his wife calls him at work, he half expects the worst every time. If everything turns out well in the end, he is happy to put up with that.

A large part of Kohl's work consists of consultations, several times a day. Parents from all over Germany, and sometimes from other countries, want to know whether their children can be helped and whether they should come. Patients are usually admitted from around the 22nd week. According to the film, Kohl is available almost around the clock, and his family often has to take a back seat. He himself says you always have a good excuse, quoting the Tim Bendzko song about quickly saving the world. At home there are few counterarguments when he has to head out again. His family says this was difficult at first. Once you get used to it, he just comes home later.

According to Kohl, finding young talent for fetal surgery is not easy. There are always young doctors who are interested in it. The question, though, is whether they want to go all the way: pushing through new treatment methods against resistance and first building up the necessary expertise. That takes emotional stability to deal with frustration when things don't go well. The conversations with parents are also demanding. These are not quick chats in passing, but sometimes hours-long and repeated consultations.

Dania is in the 22nd week of pregnancy when a hospital makes the diagnosis. Her baby has a unilateral hydrothorax: fluid is collecting in the chest cavity, compressing the heart so that it can barely beat. The hospital gave them no hope, Dania and her husband recall. They were told the baby would not survive and asked whether they were prepared to terminate. They left the hospital with a folder about "star children" and were already thinking about the funeral. Someone explained to them where a burial plot could be. And they were asked whether they wanted to let nature take its course or terminate. A termination would have meant the baby receiving an injection into the heart and Dania having to deliver her stillborn. She describes that moment as horrible. They believed there was no doctor left who could help.

Like Vanessa and Stefan, they had to search on their own. They came across Kohl through a Facebook group. During the examination in Mannheim, he shows that the fluid in the chest and abdominal cavities is slowly increasing. The baby is barely moving anymore. Kohl wants to insert a shunt, a tube about three centimeters long. Until birth, it is meant to ensure that the fluid drains continuously into the amniotic fluid. If the mother is doing well the day after the procedure, she can go home. After that, check-ups follow every seven to ten days.

Asked how the children have usually fared after birth, Kohl replies that it mostly ends well and that most children have "nothing bad." How things turn out in an individual case, however, can only be known once the genetic testing has been fully completed. Based on the preconditions, things look good for now. The parents have to do the genetic test to rule out other conditions. The operation is scheduled for the next day.

This procedure will be difficult too. Dania's belly is already large, but the baby is still very small, and it is hard to reach the baby's body through the abdominal wall. Kohl makes his guiding principle clear: the mother's safety always comes first for him. If it becomes apparent during the procedure that something is not going well, it is stopped immediately, no matter how far along they already are. He never operates "at all costs." He attributes his skills to very good training in San Francisco. On top of that, he had very good teachers in prenatal medicine and obstetrics, from whom he learned a great deal over the years.

A recurring theme is that the parents had to find Kohl themselves. Dania and her husband regret that no one referred them to him. No one said there was a doctor who did this regularly. You had to do your own research. Their impression is that Mannheim and Kohl are well known. They don't understand why they weren't simply told. They describe one remark from their earlier consultation as particularly hurtful. There, they were asked how old they were and how long it had taken to get pregnant, and then advised to simply try again. It felt like buying a new pair of trousers, they say.

Kohl's procedures were initially considered experimental. Today, 25 years later, many of his techniques are standard, according to the film. As an example, the film cites spina bifida, or open spine. In this condition the spinal cord is exposed, and the unborn child faces the risk of paraplegia, hydrocephalus or incontinence. Kohl protects the exposed spinal cord with a patch. The affected areas are about one and a half to two centimeters in diameter. Attaching a coin-sized patch, roughly the size of a 20-cent piece, can be extremely difficult, he says. The film describes prenatal minimally invasive surgery for spina bifida as one of the most complex procedures there is.

Kohl teaches his methods to colleagues around the world. In Poland, Robert Samaha has been working with Kohl's spina bifida technique for nine years. In a video conference, Kohl proposes a joint study. For years, Samaha and his team repeatedly traveled to Mannheim to learn from Kohl. Before that, they had never operated on spina bifida, Samaha says. Kohl taught them the procedure from scratch, and he has many ideas that are controversial at first.

Samaha sees the benefits of prenatal surgery as clearly proven. According to all the results and studies, children who have had the operation do significantly better. More than half of them walk independently, compared with only about 20 to 30 percent without surgery. He considers it unethical not to offer the operation when you know it gives the child better chances in life.

Four days after the operation, Vanessa and Stefan's daughter Charlotte is born. Everything went well with the balloon. The attending doctors assess the condition of her lungs as good so far. Charlotte still needs some oxygen, and that will remain the case for the next few weeks. Her heart function is fine. Vanessa wishes she could simply hold her daughter in her arms instead of working with the breast pump.

Almost three weeks after the birth, Charlotte still has difficulty breathing. On Vanessa's chest, however, she needs less oxygen. The parents describe how the bond is now growing even closer, which is why it hits them harder when the baby isn't doing well. They hope to move to another ward in a few weeks and then go home.

Kohl receives mail from parents several times a week, from happy ones and from sad ones. The letters from parents whose children have died are usually thank-you cards as well, he says. Just not in a major key but in a minor key, and often just as moving. According to the film, he cannot help about a third of the children with life-threatening conditions.

Alena and her husband are among the parents who had only a short time with their child. Their son Marlon had two severe malformations. Kohl was able to operate successfully on one of them, but a heart defect remained that was more serious than expected. The parents opted for a palliative birth. Alena calls it the best decision they could have made. Marlon was born at a hospital in Stuttgart and is to be laid to rest in a woodland cemetery in two weeks. When Alena sees the name plaque there for the first time, she finds it comforting that he will not be lying alone. But she would rather there were no need for such shooting-star trees in the first place.

A termination would never have been an option for the two of them. Thanks to the operation by Kohl, they had the chance to get to know their son. Alena shows the clothes Marlon wore after his birth and calls them precious memories. With an early termination she would have none of that, and she would not want to be without it. She talks about the barely half an hour the three of them had together. Her husband lay beside her, Marlon on her chest. They consciously spent the time as a family of three and told him the words they wanted to give him to take along. He fell asleep very peacefully on her chest. She will never forget how his weight felt in her arm, she says; no one can take that from her. She is his mom and always will be.

For Dania and her husband, the genetic test comes back normal. The baby arrives earlier than planned. The shunts are still in the chest cavity as intended. To prevent germs from entering the baby's body through the tubes, she is delivered by cesarean section. At 10:17 p.m., their daughter is born; her name is Libia. Kohl checks the clamped shunts, which are to be removed in a few days.

Charlotte makes it through the first critical period. After almost three months in the hospital, she is allowed to go home. Medical equipment was a constant companion; now the parents want to manage without a monitor. That will feel very strange at first, they say, because they are so attuned to the sounds. Vanessa and Stefan have agreed that from now on she will sometimes call him just because, without him immediately thinking of an emergency. Stefan now wants to see Mannheim "only in the rearview mirror."

As they say goodbye, the hospital team acknowledges how the parents got through this time: 14 weeks without amniotic fluid, that's something you have to manage first. The parents recall that when they saw their daughter in the incubator back then, they never thought they would see her grow like this. Kohl says goodbye with the phrase he says he always uses at this point: "Enjoy her."

For the first time, Kohl celebrates with former patients and their families. He arrives late, as so often, and for good reason: he still has to examine a patient whose twins he operated on the day before. Only a fraction of his former patients are at the celebration, and yet the hall is full. A boy named Jakob wants a photo with him. One child says that without him, they would not be able to walk.

In his speech, Kohl stresses that he was really only the one who tipped the scales. The lion's share of the work was done afterward by the nursing teams and the doctors, usually after the birth as well. Tipping the scales, however, can decide between survival and death.

Angelina was the second child with a life-threatening diaphragmatic hernia whom Kohl operated on, 21 years ago. She says it overwhelms her to see all the children. She is glad that she is doing so well today, that she is not in a wheelchair and can lead a normal life. Back then, Kohl gave her an apple tree, which stands in the garden and grows with her.

Kohl himself calls the reunion tremendous. It is wonderful to see, and it fires him up. He hopes he can continue this work for a few more years.