Accompanying a life with love

Accompanying a life with love

When a baby cannot survive long after birth, prenatal consultants help mothers carry their child to term and bond naturally, avoiding the psychological and physical traumas of abortion.

It was a typical busy day at Gemelli Hospital in Rome when Claudia, a pregnant young woman in her third month, entered Dr. Giuseppe Noia’s office. She was worried after doctors had told her that her baby might be born without kidneys. If so, she wanted the pregnancy terminated, and fast.

Dr. Noia, who heads the hospital’s Center for Prenatal Diagnosis and Therapy and deals with problematic pregnancies on a daily basis, immediately offered to run thorough tests. He confirmed that the baby was missing both kidneys. Unable to urinate, the baby would not develop functioning lungs and would die shortly after birth.

Claudia saw no other solution than an abortion. Dr. Noia suggested an alternative: “accompanying” the baby.

“Accompanying the baby?” Claudia asked, confused. “Abortions,” Dr. Noia explained, “can cause the mother serious psychological and physical trauma. It’s called post-abortive syndrome.” Accompanying the baby meant monitoring the pregnancy with routine procedures and treating the baby with the same care as a normal newborn throughout its brief life.

Claudia was astonished: “Why would I want to bond with and come to love this baby, knowing all along that I will lose it? You are asking me to do something that is superhuman!”

Dr. Noia’s heart went out to the young mother: “No, Claudia, it isn’t superhuman. It’s human. If a hematologist told you that your three year old had only a few months to live, what would you do? You’d care for the child with your whole heart until the very end, wouldn’t you?”

Claudia protested, “But this is different!”

“What’s the difference between a three year old and a three month old?”

“This baby will suffer terribly!”

“It will suffer terribly if you choose to cause it to die. It will suffer terribly if you choose not to love it. And you will suffer either way. If you keep the child, though, you will accompany it on its brief journey, aware that you are loving it until the end, and this will comfort you deeply. If you don’t, you will cut off a little bit of yourself.”

“I can’t do this,” Claudia said, and left.

Nine years later, in 2001, she returned to Dr. Noia’s clinic. “Do you remember me, Dr. Noia?”

The clinic sees hundreds of people every day, and Dr. Noia had to offer her his apologies. She reminded him of her story, and said: “That day, when I left, I was angry with you. I thought you put your Catholic views ahead of my concerns and the concerns for my unborn daughter. I thought you were trying to undermine my autonomy as a woman.”

“Claudia, we don’t force anyone here,” Dr. Noia said, “and the proof is that you had the abortion you wanted.”

“I came to tell you that you were right,” Claudia interrupted him, explaining how, after her abortion, she had fallen into a depression so severe that she couldn’t face another pregnancy for a full nine years. When she finally conceived, she had a miscarriage. “Now, though,” she concluded, “I’m pregnant again.”

Dr. Noia tried to reassure her: “Don’t worry about the past, Claudia. It’s behind you.”

“But I wonder all the time what my baby would have been like, and I wonder where she is now!”
Dr. Noia looked deep into her eyes. “Your baby is inside your heart and will always be there.”

Claudia tried to smile. “Dr. Noia, I’m pregnant again, and this baby is missing both kidneys, too.”
There was a moment of silence. Claudia continued: “This time, though, I want to accompany her. Will you accompany both of us?”

Dr. Noia smiled, “Claudia, that’s what I do. I’m the official companion.”

Claudia finally broke into a little laugh. “I want this child to have the best possible care and the full dignity of a normal baby.” Dr. Noia agreed and they set up a schedule of appointments and tests.
A few months later Alice was born. She died four hours later. The experience allowed Claudia to make peace with the death of her other daughter. She felt it was her other daughter who had brought her to Dr. Noia this second time and allowed her to heal inside. “These nine months,” she said, “have redeemed the past nine years for me.”

In her newfound peace, Claudia told Dr. Noia she wanted to try again. Dr. Noia ran genetic tests on her and found that the likelihood of her conceiving a baby without kidneys was actually 25 percent. Claudia decided to go for it. A year later Sofia was born, perfectly healthy.

Overzealous testing, unnecessary anxiety

Professor Giuseppe Noia heads the Center for Prenatal Diagnosis and Therapy at Rome’s Gemelli Hospital. The center sees 1,500 patients a year, 80% of whom are high-risk pregnancies. The center aims at providing the most comprehensive, up-to-date and balanced education concerning at-risk pregnancies, aiding parents in making the decision to bond with and love a malformed fetus, offering all sorts of medical and peer support for parents and avoiding unnecessarily painful terminations. According to Dr. Noia, the Center has thus far been able to avoid abortions in 250 out of 284 cases.

Dr. Noia points out cases in which overzealous testing leads to unnecessary worry and anxiety for parents. German measles, for example, is considered a major pregnancy threat and is often linked to heart problems and blindness in the child. According to Dr. Noia, however, this outcome occurs only when the mother contracts the illness in the first 14 weeks of pregnancy, and even then not always.

Dr. Noia believes that proposing what are sometimes low-level probabilities as certainties is one of the biggest problems in the field of prenatal care. Hydrocephalus, another example, can be devastating and even lethal, but a remarkable 82% of people with hydrocephalus lead a perfectly normal life.

“There’s a pervasive idea in our medical culture,” Dr. Noia says, “according to which a dead child is preferable to a disabled child.” Doctors with this concept of disability are not, Dr. Noia believes, the best prenatal consultants. Amniocentesis, an increasingly common prenatal diagnostic tool, is highly stressful on parents and typically conducted between the 12th and the 21st weeks of pregnancy, when the child’s nervous system is developing, and the mother should be as calm and serene as possible.

According to Dr. Noia, a new kind of prenatal care is much needed, one in which disabled children are valued and, when devastating damage occurs, lovingly “accompanied,” so that the baby’s death may be as peaceful as possible for parents and
baby alike.

There are 45 centers in the U.S. that help parents “accompany” terminal fetuses. Parents presented with this option and the benefit of medical and peer support are generally able to consider a new pregnancy within months, whereas parents who choose a termination find that they need between five and 10 years before trying again.

Related article

New life at the Medical Center

This article is published in the Feb. 2009 issue of Living City.