One of the most difficult situations that a couple who expects a child has to go through is knowing that Your baby suffers from a serious degenerative disease and is faced with the painful decision to move forward or not with the pregnancy.
We spoke with a mother who wanted to tell her experience to make these cases visible and help other parents who have lived or are going through this difficult time. Tells us why he decided to give birth to a baby that he knew would not survive and how he is living the duel.
The hardest decision of some 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 assaulting you 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 must be respected.
She explains that her baby had the same disease as her, although in her case with mild involvement, and that "being a rare ailment 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. "
"It is not easy to make such a tough decision, made with a broken heart and mind simultaneously."“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 moved on. 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 nobody prepares you to live that painful moment. But yes you can make his life and his death a special moment and only "If you open your conscience and seek life within death, love within heartbreak, pleasure within pain and your joy in the midst of so much sadness."
In Babies and more The emotional project that sensitizes and makes visible the gestational and neonatal lossesAnd how to achieve it? Talk about “Perform multiple rituals in honor of your son, try to live with full 'joy' those last days (hours, in some cases). Although it is very painful, try to fully enjoy the time that will still be within you and just enjoyed that short stay. ”
Make sure everything you can think of will be fine:
"The time until the day indicated passes so fast and so slow at the same time, that you feel involved in a fight against yourself and your feelings, all of them opposed: anger, anger, sadness, pain, envy, fears ..."“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 he leaves you with each of your actions. Thank you all the lessons that all this is offering you and all those that are coming, because I assure you that they will be many ”.
This is remembered by Tro's mother, who adds that “All these emotions and feelings dance a waltz with love, if love, the great love that has left us with its presence and essence. It teaches you so much that you are not and cannot be the same. It makes you stronger, harder, more mother and more good person. ”
He wanted to give birth to his baby
She tells that she fought against all the bureaucracy so she could finally give birth to her third child at the clinic she wanted. So far, the story could be one more if it wasn't because she was going to give birth to a son who wouldn't survive.
Unfortunately it was the second time she had to go through the painful situation of losing a child this rare degenerative genetic disease that she suffers, although with little involvement. Tro's mother explains:
“All the doctors specialized in the subject had confirmed to us that he was going to inherit my disease to a greater degree and that in all likelihood it was going to cause him a life of continuous suffering. After much meditation and with a broken heart in a thousand pieces, his father and I made the toughest decision of our life for the second time, because we were already suffering. ”
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 pregnancy, after performing a chorion biopsy, doctors confirmed the worst diagnosis for her third child, He decided that he wanted to enjoy a birth as normalized as possible, so that the memory of his son was beautiful, and he succeeded.
We know that the story of your birth may be somewhat long, but we wanted you to tell your 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 understand the pain of having to terminate a pregnancy nor find the support they need to get out of the depression that causes such a situation. ”
In Spain, the termination of pregnancy is regulated by Organic Law 2/2010, of March 3, on sexual and reproductive health and the voluntary termination of pregnancy.
In Title II, it is established that The woman can access this possibility as long as it does not exceed twenty-two weeks of gestation. Further:
"When fetal anomalies incompatible with life are detected and thus recorded in an opinion previously issued by a doctor or medical specialist, other than the one practicing the intervention, or when an extremely serious and incurable disease is detected in the fetus at the time of diagnosis and this is confirmed by a clinical committee. "
This is the story of his birth
"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 about him, although at no time did my dream resemble what I really lived."
He explains that he said goodbye to his five-year-old son, with a very good kiss and hug without knowing when they would be by his side again. And that the boy, still half asleep, told them some words that reached their hearts: "Give him a very strong kiss from me and a hug."
Recognize that he collapsed upon entering the hospital and "Seeing other women also about to give birth, but surely not with our end." But then came Maria, the midwife, and calmed down: "He sat next to me, took my hand and we talked."
And they talked a lot. Not only did he explain 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 your means and the circumstances of the moment."
An 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 was beginning to feel a mixture of emotions that came 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 very respected and aware. ”
A very special altar
Photo courtesy of Tro's mother The time had come to prepare your 'altar', with the things that "We had brought to accompany their arrival and they had given me some friends in a beautiful ceremony that we dedicated a few days before."
Thus he speaks of his ritual, which included among the 'offerings', the photos of the ultrasound, something of each family member and "The clothes that a very special friend had made with such love."
While they waited for the delivery to begin, the midwife suggested that they do a last ultrasound and see it, since it was more than a month ago.
“It was such a beautiful and special thing to be able to see him like that for the last time and to be able to certify that I was where I felt it and I had noticed it for a few weeks ago.”
“He was calm and moved little because the medication was beginning to work, but he could 'greet' us for the device once more and we could hear the tremendous beat of his heart. Dad took pictures 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:
“I felt it with such intensity! It was his time and he came out so calmly and gently from within me ... He was our son, who was dead, because with 18 weeks of life he could not bear the birth. But he was warm and warm as the one. ”“They helped me get well in bed and there began our last dance. I noticed all his contact inside me, there were three senses bids: in the first one all the liquid that remained was left and in the second, he appeared ":
Already in a last bid, the placenta came out. It was 3:45 p.m. on the afternoon of April 2019.
Skin with skin
Photo courtesy of Tro's mother “They immediately put it on me. He was my son. It was the first and last time I was going to have him like that with me and I couldn't miss that moment. He had almost transparent skin and very, very soft. He was very small, weighing only 185 grams and measuring about 20 cm, but for us he was the most precious baby of all. It was pink, and little by little it became brown. ”
They were together for more than three hours, until seven in the afternoon.
"He was and will always be our third child."“Those hours we spent with him were part of the moment so magical, beautiful, painful and sad that we had the good fortune to live by his side. We were able to take pictures, shape their tracks, talk to him, kiss him, etc. It was so beautiful, it was so calm, serene ...
There are no words that describe that moment we live and that we will never forget. But what I will not regret is never having lived it in this way so respectful, loving, warm ... in a tremendously painful, sad and moving situation.
Life after: perinatal grief
"There is everything on this roller coaster of mourning," Tro's mother explains, "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 says, death always brings positive things, even if you can only see it after a while. Explain that the experience lived allows you to help other people who have gone through or are going through similar situations, and that has been largely their engine to move forward.
In Babies and moreThe nine things you should not say to a woman who has had an abortionHe assures that with previous friendships, and even with family members, the relationship is different:
“The damage that simple phrases or gestures can do is incredible. Feeling misunderstood, rejected, judged by your close friends is something that makes everything much more painful. ”“Unintentionally, they sometimes say words or phrases that are not right and don't know how to help. They lack the empathy necessary to not judge or offend, since they cannot be put in our shoes as much as they want. ”
And yet he says they don't need to do much, “Just follow a healthy accompaniment process and respect your times. With many more silences than words, there is enough. ”
Add that loved ones “they should feel more than deserved respect for us, 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”.
Fear of a new pregnancy
Now he recognizes that his biggest fear, and that of his partner, is to face a new pregnancy, because her desire to be a mother is so great that it seems she has 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 on 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 monitoring will be thorough, but even this will increase our tension and our doubts. It will be that way until we can hold our baby in our arms and verify that it is okay. ”
In Babies and more, he never lost hope, and after 10 years looking for a pregnancy and 13 abortions, he could see his dream of being a mother fulfilledAdd that Most parents who have had to experience a termination of pregnancy feel the need to give visibility to their children (respecting his grieving time), “But with the fear that burns you inside, the fear of rejection for having done something you did not want to do, for having decided to interrupt something that you loved so much, for having chosen what for some was the easy way, or for having dreaded suffer for a sick child And, as in my case, that gesture of unconditional love can sometimes turn and become something you never imagined living. ”
“We will get ahead, because our stars, wherever they are, will unite us. Their souls will always continue with us. And this, like this whole story, is the most magical of all. ”Tro's mother is part of a private Facebook group, made up of women who have gone through the hard swallow of an ILE / IVE (Voluntary and Legal Termination of Pregnancy). States that "If you think we can help you, don't hesitate to write to us."
In Babies and more Getting pregnant again after a gestational loss: how to manage fearsFinally, the mother explains that “Little by little we are breaking through and gathering strength to explain our stories, even if they are anonymously. Little by little, we have visibility and give our children the place they deserve. ”
Photos | Ceded by Tro's mother
