One of the most difficult situations that an expecting couple has to go through is knowing that their baby suffers from a serious degenerative disease and being faced with the painful decision of whether or not to go ahead with the pregnancy.
We spoke with a mother who wanted to share her experience to make these cases visible and help other parents who have lived or are going through this very difficult time. She tells us why she decided to give birth to a baby she knew would not survive and how she is grieving.
The hardest decision of parents
“When you have to interrupt your pregnancy because your baby suffers from a rare disease, you feel alone and the most unfortunate person on the planet, in addition to having a thousand doubts.”
With these words, this mother begins to tell her experience. She refers to herself as Tro’s mother (‘thunder’ in Catalan), because she prefers to remain anonymous, and you have to respect her.
She explains that her baby had the same disease as she, although in her case with mild affectation, and that “as it is a rare ailment it is little known, it has no cure and the specialists cannot assure you to what extent it will affect your baby which makes the decision even more difficult. “
“You start looking through the networks for possible effects of the pathology that your child has, you see that most parents have ended up interrupting their pregnancies, but you also find cases in which they have continued. It is when the eternal love for your unborn child multiplies and doubts triple. At that moment, thinking about the future, is when you finally have to decide, a decision that will mark your life and that of those around you ”.
Comment that no one prepares you to live that painful moment. But you can make his life and death become a special and unique moment “if you open your conscience and look for life within death, love within heartbreak, pleasure within pain and your joy in the midst of so much and so much sadness ”.
And how to achieve it? He talks about “performing multiple rituals in honor of your son, trying to live with full ‘joy’ those last days (hours, in some cases). Although it is very painful, try to make the most of the time that will still be inside you and you have just enjoyed that short stay ”.
Make sure that everything you can think of will be fine:
“It is highly recommended that you record this by making small memories with photographs, recordings or videos. Show your baby the love you have for him and the love that he leaves you with each of your actions. Thank you for all the learning that all this is offering you and all those that are yet to come, because I assure you that there will be many ”.
This is how Tro’s mother remembers it, adding that “all these emotions and feelings dance a waltz with love, yes love, the great love that has left us with its presence and essence. It teaches you so much that you are no longer and cannot be the same. It makes you stronger, tougher, more of a mother and a better person ”.
Wanted to give birth to her baby
She says that she fought against all the bureaucracy to finally be able to give birth to her third child in the clinic that she wanted. So far, the story could be one more if it weren’t for the fact that she was going to give birth to a son who would not survive.
Unfortunately it was the second time that she had to go through the painful situation of losing a child to this rare degenerative genetic disease that she suffers, although with little affectation. Tro’s mother explains:
“All the doctors specializing in the subject had confirmed to us that he was going to inherit my disease to a greater degree and that in all probability it was going to cause him a life of continuous suffering . After much thought and with our hearts broken into a thousand pieces, her father and I made the hardest decision of our life for the second time, because we were already there to suffer ”.
According to her account, the loss of her second child was very hard and left her very touched, so when in the 12th week of gestation, after performing a chorion biopsy, the doctors confirmed the worst diagnosis for her third child, He decided that he wanted to enjoy a birth as normal as possible , so that the memory of his son would be beautiful, and he succeeded.
We know that the story of your birth can be a bit long, but we wanted you to be able to tell about your very special birth, with as many details as possible because:
“By telling my story I want to support those women who go through the same pilgrimage, without many understanding the pain of having to interrupt a pregnancy or find the support they need to get out of the depression caused by such a situation.”
In Spain, the interruption of pregnancy is regulated by Organic Law 2/2010, of March 3, on sexual and reproductive health and the voluntary interruption of pregnancy.
In Title II, it is established that women can access this possibility as long as they do not exceed twenty-two weeks of gestation. What’s more:
“When fetal anomalies incompatible with life are detected and thus recorded in an opinion issued previously by a doctor or specialist, other than the one who performs the intervention, or when an extremely serious and incurable disease is detected in the fetus at the time of the diagnosis and confirmed by a clinical committee “.
This is the story of her childbirth
“I don’t remember if the night before the scheduled delivery I slept a lot or not, what I do know is that I dreamed of him, although at no time did my dream resemble what I really lived.”
She explains that she said goodbye to her five-year-old son with a heartfelt kiss and hug without knowing when they would be by her side again. And that the boy, still half asleep, said some words that touched their hearts: “Give him a very strong kiss from me and a hug.”
She admits that she collapsed when entering the hospital and “seeing other women also about to give birth, but surely not with our end.” But immediately Maria, the midwife, came and calmed down: “she sat next to me, took me by the hand and we talked.”
And they talked a lot. Not only did he explain to her what the whole process would be like and all the side effects it would have. He confirmed that her birth plan could be carried out completely (even not opting for the epidural) and that she would support her in everything, “always within her possibilities and the circumstances of the moment.”
One hour after admission, the midwife gave her the first medication to start causing labor. He explains that 60 minutes had not yet passed when he began to notice the first side effects: tremors, chills, cold …:
“My body began to feel a mixture of emotions that had already come from many days ago, my legs moved by themselves and I couldn’t stop them, even more than my hands and arms. It reminded me of the experience of my first birth with my oldest son, who was also highly respected and conscientious.
A very special altar
The time had come to prepare his ‘altar’, with the things that “we had brought to accompany his arrival and that some friends had given me in a beautiful ceremony that we dedicated to him a few days before”.
This is how he talks about his ritual, which included among the ‘offerings’, the ultrasound photos, something from each member of the family and “the clothes that a very special friend had made for him with so much love”.
While they waited for labor to begin, the midwife suggested they do a last ultrasound and see him, since it was more than a month since the last one.
“It was something so beautiful and special to be able to see him like this for the last time and to be able to certify that he was where I felt him and had noticed him for a few weeks ago.”
“He was calm and moved little because the medication was beginning to take effect, but he was able to ‘say hello’ to us through the device once more and we could hear the tremendous beating of his heart. The father took photos and videos of the moment, and it will be one of the many memories of that day that we will always keep with us ”.
The pains began to be more and more intense and, suddenly, the mother hugged her partner :
“They helped me get into bed and that’s where our last dance started. I noticed all his contact within me, there were three senses pushing: in the first all the remaining liquid came out and in the second, he appeared “ :
In a last push, the placenta came out. It was 3:45 p.m. on a day in April 2019.
Skin to skin
“They put it on me right away. He was my son. It was the first and last time that I was going to have him like this with me and I couldn’t miss that moment. His skin was almost transparent and very, very smooth. He was very small, weighed only 185 grams and measured about 20 cm, but for us he was the most precious baby of all. It was pink, and little by little it became dark ”.
They were together for just over three hours , until seven in the afternoon.
“Those hours that we spent with him were part of the moment so magical, beautiful, painful and sad that we had the great luck to live by his side. We were able to take pictures, record his footprints, talk to him, kiss him, etc. It was so beautiful, it was so calm, serene …
There are no words that describe that moment that we live and that we will never forget. But what I will never regret is having lived it in such a respectful, loving, warm way … within a tremendously painful, sad and moving situation ”.
Life After: Perinatal Grief
“There is everything in this roller coaster of grief” –explains Tro’s mother– “conflicting feelings that make us continue with our personal struggle against what life has offered us and what we must accept and learn”.
But as she herself assures, death always brings positive things, even if you can only see it after a while. Explain that the lived experience allows you to be able to help other people who have gone through or are going through similar situations, and that has largely been their engine to move forward.
He assures that with previous friendships, and even with family members, the relationship is different:
“Unintentionally, they sometimes say the wrong words or phrases and don’t know how to help. They lack the necessary empathy not to judge or offend, since they cannot put themselves in our shoes no matter how much they want to ”.
And yet he assures that they do not need to do much, “just follow a healthy accompaniment process and respecting your time. With many more silences than words, there is enough ”.
He adds that loved ones ” should feel towards us a more than deserved respect , for having had to do something that we would never have done or thought if it had not been necessary, and that we did it with all the pain in the world and greater love for our family ” .
The fear of a new pregnancy
Now she recognizes that her greatest fear, and that of her partner, is facing a new pregnancy, because her desire to be a mother is so great that it seems to have multiplied or tripled.
“If in the end you decide to take the step and get pregnant again, the greatest fears come, those uncertainties that will be repeated in the day to day of pregnancy and that does not allow you to enjoy that moment in the same way as those couples who have not lived something like that.
They will do a thousand tests and the follow-up will be meticulous, but even this will increase our tension and our doubts. It will be like this until we can hold our baby in our arms and check that he is okay. “
He adds that most parents who have had to experience a pregnancy interruption feel the need to give visibility to their children (respecting their time of mourning), “but with the fear that burns you inside, the fear of rejection by for having done something you did not want to do, for having decided to interrupt something you loved so much, for having chosen what for some was the easy way, or for having dreaded to suffer for a sick child. And, as in my case, that gesture of unconditional love can sometimes be turned and turned into something you never imagined living ”.
Tro’s mother is part of a private Facebook group, made up of women who have gone through the hard time of an ILE / IVE (Voluntary and Legal Termination of Pregnancy). He states that “If you think we can help you, do not hesitate to write to us.”
Finally, the mother explains that “little by little we are making our way and gaining strength to explain our stories, even if they are anonymously. Little by little, we are gaining visibility and giving our children the place they deserve ”.
Photos | Loaned by Tro’s mother
