Falling Stars – Coping with grief after therapeutic termination of pregnancy

CiaoLapo does not pretend to question the morality of the decision to undergo or not a therapeutic interruption of pregnancy (ITG), but would rather offer support to families who have lost a baby / girl during pregnancy.

The decision to do an ITG is very personal and there are many factors (medical advice, the life that the child would have in the world, potential life risk for the mother, a society that has difficulty accepting differences, etc. .) that lead a family to make such a painful choice. So please respect the pain of those who need support.

(A little warning: I’m not Italian so I apologize for my linguistic inaccuracies.)

I am sorry to welcome you in this little corner of Ciaolapo because if you have arrived here, it is likely that you or someone you love is making, or has already taken, the difficult decision to terminate a pregnancy for therapeutic reasons.

While technology increasingly improves the ability to diagnose a disease of the fetus (or a pregnant woman), the assistance offered, once a diagnosis is received, often leaves something to be desired. Parents who receive the diagnosis may feel lonely, without knowing who it would be best to turn to to understand more about the disease or to understand what it would be like to give birth to a child with the disease in question. And if parents are in the position of having to consider the possibility of an ITG they may feel even more isolated for fear of being misunderstood or judged. The situation is further complicated by state laws and religious doctrines. Even if many parents faced with a serious prenatal diagnosis decide to terminate the pregnancy (in France there are about 5000 ITG / year[1] ), often those who do feel lonely and / or guilty despite the fact that they have made the decision to save their child from a life of pain. An American social worker, in his research on the subject, quotes, “When the loss of a person is the direct result of their own choice, such as an ITG, clinical experience shows that these people believe they are less entitled to hear. in mourning. However, these ‘choice’ losses are often the most demanding in terms of the ability to mourn with adequate support and time [2] ”.

So, Ciaolapo is committed to offering a small corner to make you feel less alone; to try to relieve yourself of your pain a little, to feel understood by someone.

I’ll go first …

1. The story of a shooting star

A few years ago, after a month of about 15 ultrasound scans, one MRI, and one amnio, I went abroad with my husband for further tests, hoping to understand what our baby was suffering from. After doing these further tests, the attending physician told us that the situation would be evaluated by a medical committee with a result the next day. When we got back to the treating doctor, he gave us a speech, saying that ours was a particularly complicated case because they couldn’t figure out exactly what our baby had. Despite this, the whole committee was convinced that the child was suffering from / suffered from a very serious disease (they hypothesized an XYZ disease). They made us understand that it was going to be a life of suffering, of exams, of surgery, and that there was a high probability of a very short life.

That’s how they left us a ‘choice’ … a terrible, difficult, sad, tragic, impossible choice … only if they had left us this choice, we understood that it was, in reality, a kind of non- choice.

A choice-not-choice that will follow us for life …

But let’s take a step back.

The pregnancy

Even though our pregnancy was not that easy, there were no obvious signs to make us think that our baby was not well. All the blood tests, the amniocentesis, the first ultrasounds… they were all as they should have been. Maybe the baby looked a little small in length, but nothing alarming. So it was a terrible surprise when our gynecologist informed us that the umbilical cord only had two vessels instead of three (the single umbilical artery). Frightened, I immediately consulted the data available online where I found the following information, “One half to two-thirds of babies with a single umbilical artery are born healthy and without any chromosomal or congenital abnormalities. Of the remaining babies with a single umbilical artery, some research suggests that about 25% have birth defects, including chromosomal abnormalities. [3] “. However, we were reassured by a negative fetal cardiogram from ultrasound and amniocentesis which confirmed the presence of both kidneys and the exclusion of the most common chromosic abnormalities. Then, about a week after the discovery of the single umbilical artery, the doctor told us that we could “breathe quietly”.

A few weeks later we went back to the gynecologist for a monthly checkup. I’ll never forget his face when he started reading the ultrasound measurements. He started to sweat, little drops on his forehead and suddenly I couldn’t breathe anymore. Something was wrong. Something was wrong. But our baby was perfect – what could possibly go wrong?

In a few minutes we realized that the baby was growing disproportionately. The doctor said not to panic; perhaps it was “just” an IUGR caused by the single umbilical artery. He tried to reassure us with similar happy ending stories, but he also made us understand that there was another possibility: the one we didn’t even want to imagine. But it took at least ten days before the baby could be remeasured. The longest ten days of my life.

I remember feeling like there was a thick dense fog around me. I was convinced it wasn’t really happening to us. I was convinced that there had been a mistake and that everything was fine, fine. I was convinced that everything was going wrong and I didn’t know where to turn.

We went on like this for the following days: united as a couple; isolated from the world; full of hope, of despair; tiredness; anger; confusion. Every kick felt in the gut was a punishment for thinking the worst; every football brought us the hope that he was fine, fine.

While we waited, we would hear the opinion of at least 10 doctors from around the world and the verdict ranged from “probably an IUGR” to “60% chance of a mental handicap, not to mention physical appearance. However, it was an Italian neo-natologist who painted the most terrifying picture: 0% probability of normality; 40% chance of mental problems; and 99% chance of serious physical problems.

At that point we could only begin to ask ourselves: is it right to give birth to a child with so many elements against him? ” “Is it okay to make another person suffer so much?”

Somewhere I had read this question: “if a truck was about to hit your son, would you leave him where he is?” But what do you do when the truck is the life you wanted to offer him?

At the request of the geneticist who followed us (an extraordinary person), we went for further tests and even if the results did not show a precise diagnosis, we still understood that there were too many signs against him, against us. But always hoping to discover the disease (or not) that our baby was carrying, we even went to a hospital abroad specializing in pre-natal problems, where they would have a special exam to examine the baby’s bones [4] . After having done the recommended exams, our dossier was delivered to a team of specialized doctors and it was the team that gave us the diagnosis: and for this team, there was only one choice to make … [ 5]

Like so many parents who make difficult decisions about their children’s future, we too have had to. But is it possible to make a decision like this? How can you make a decision when there is no “right” choice? And what is really right and for whom?

The Choice Taken

Everything started moving fast, too fast. It is as if time, standing still for a month, has started to run.

Three days after the outcome of the committee meeting, after so many hours of tears, pain, doubts, the day has arrived. The night before entering the hospital I ate an ice cream: his last supper (how do you do it?). On a sunny Friday morning, we went into the hospital (but weren’t we supposed to go into the maternity ward?). We found another beautiful, very sad couple in our same room (why does this happen to the others too?).

That same day, they began the medical procedure. It was, without a doubt, the most tragic morning of our lives. I cannot put into words what I experienced: neither inside nor outside. That same afternoon I was discharged to go to sleep at the hotel for the night. How can I describe how I felt during those 24 hours? I don’t think there are words to describe when you don’t feel the kicks anymore; when you know it is “your culpa”; when people see you pregnant but you know that your baby who is not breathing anymore … If I could have gone in his place.

The next day we went back to the hospital and on Sunday morning, after six hours of labor, our baby was ‘born’. What we have been waiting for for months. We wanted so much to see it. And like all parents, we are convinced that he was the most beautiful child in the world. What we have been waiting for for months. Only he didn’t cry. We haven’t seen his eyes. And who could possibly expect this?

Facing the loss

Not even a day goes by when I don’t think about him. Not even a day goes by without me wondering if there could have been a miracle to have him here with us – healthy and happy. Not even a day goes by that I don’t ask if we did the right thing… I can’t lie: I still wonder. A special person who works with sick children and said to me, “in life there are certain things that you will never be able to put right, to accept … but you must know that if he were here with you, it would be even more difficult to put things in order: for him, for you, and for your families. ” On a rational level, I know you are right: we made the only decision we could have made. So we suffer in his place. Like all parents. We suffer to give him peace.

Love and Answers

I often read about women who find themselves in front of people who judge instead of helping and you don’t know how sorry I am. People can’t pretend to understand a decision like this. Nobody takes it lightly. Nobody takes it for eugenic reasons. I have talked to many mothers who have made this decision. None of them say “I’m glad I did it”, at most they say “at least he / she doesn’t suffer”. It is therefore important to note that in bad luck we also had luck. Almost all the doctors and nurses around us have shown a professionalism, a sensitivity, a sense of humanity without which I don’t know if we could have done it. They went out of their way to help the baby and us too.

And we will always be grateful to our families and friends who have been close to us, offering love, respecting our choices and sharing our pain.

I share a sentence that helped me so much when I was looking for answers, justifications, support:

Of course, abortion, from the Buddhism point of view …

it’s negative, generally speaking. But it depends on the circumstance.

If the baby is not yet born, he will be mentally retarded

or if the birth will cause serious problems for the parents, these

are cases in which exceptions can be made. I believe that

every abortion must be approved or disapproved according to

the circumstance.

–Dalai Lama, New York Times, 11/28/1993

+++++++

2. Before making a decision [6] :

Once the word “interruption” enters your / your life, you are thrown into a world of confusion, sadness and hope. When you discover that the unborn baby is suffering from a serious illness (mental, physical or both), you are faced with a choice that does not have an “easy”, “simple” or “correct” solution. You can choose to bring the child into the world with this handicap / Maybe you choose to accompany the child at the end of his life if he is unable to live (taking advantage of palliative care). Maybe carry on with the pregnancy and let the baby be adopted. Or maybe you choose to terminate the pregnancy.

You can decide to terminate the pregnancy, because you believe that it is not right to give birth to a child to suffer or you do not feel able to care for a child in a world where differences and suffering are not always appreciated, or you do not believe you have. enough assistance available (medical, financial, emotional, etc.) to help a severely handicapped child in this world. The decision is very personal and should be made with care and caution and, where possible, without the influence of people outside the couple / mother.

Should you choose to terminate your pregnancy, take the time to prepare both emotionally and practically for the birth / loss of your baby. There is still time to spend with your child; to tell him how much you love him / her; to feel it still inside the belly. However, it is normal to experience a myriad of feelings during this period: wanting it to end quickly, anger, guilt, incredible love for your baby, wanting to stop time. Although it may seem unnatural, it is important to try to enjoy these last moments together with your child.

It may also be the time to decide if you want to see your child after “birth”. It is often advised to “see your child, hold your child in your arms, give your child a name. Bereavement is a critical step in accepting and reuniting after loss and it would be difficult to be in mourning for a child with no name or one you’ve never seen. [7] “

Additionally, you may also decide to:

– give him / her a name (if you have not already done so);

– take photos of him / her after the “birth”;

– also present it to your families;

-buy him / her a special dress;

– prepare a ceremony in his memory (or have a real funeral where it is allowed)

These are not morbid thoughts or desires. These are questions you have a right to ask yourself, and they are decisions that all parents are entitled to make.

Addressing these issues in advance may help you feel more comfortable when your child arrives. However, you can always change your mind when he is ‘born’: this is also your right.

3. After the ITG – Psychological and emotional support

Being a very “politicized” subject and on which there is little literature, many parents who suffer a therapeutic interruption believe they are the only ones. They also fear being misjudged by others and therefore “lock themselves in”. And even if it is not necessary to explain everything to everyone, in the little research I have done on the subject, I have noticed that almost all the people who had decided to open up and talk about it found themselves supported by more than understanding people. An American mother said she did not want to go to a church meeting because she felt “angry with God for presenting her with such a choice” and was afraid of being judged by others. Instead a friend forced her to go and then she thanked her because these series of meetings saved her life [8] .

So remember that it can be helpful to talk about it with “strategic” friends / colleagues / family who can give you support during the difficult period of bereavement. It is not to be underestimated how important it is to feel understood and to be able to share the pain.

It would also be important to note that people often don’t understand the depth of your pain if you don’t explain it to them. People tend to avoid talking about your experiences because a) does not want to cause you further pain or b) does not know how to deal with the subject. You may find that, with just a little effort, you will soon be surrounded by a small but important ‘support’ group.

It is also strongly advised to also speak with an analyst / psychologist during the difficult period of bereavement .

4. After the ITG – Your child in your life

Often, it is helpful to keep tangible things, as a reminder, of a loved one you have lost. We parents who have lost our baby in utero have so few memories of their ‘lives’ that the ones we do have become even more precious.

Here are some more tips to preserve your child’s memory:

-create a box of keepsakes (photos from the ultrasound; photos taken in the hospital; the hospital bracelet; a list of the foods you ate during pregnancy; a stuffed animal you bought).

-buy / have a necklace made that makes you think of him / her

-make an album with memories of him / her

– hang a picture of him / her in the house

– put his name on a gravestone

– plant a tree in his memory

-make a donation in his / her memory (ie research for the disease he / she carried)

– participate in the events of Ciaolapo; use the forums

– talking about your baby can make you feel closer to him / her

Your child has been a real presence in your life and you should feel free to talk about him / her whenever you want. Like me.

-In memory of our shooting star: you are always with us

And

-For our sun: life is also full of miracles