The testimony of Coi and Juan Pablo, parents of a 12-day-old saint

María Jesús (known as Coi) and Juan Pablo live in Galicia. They are in their thirties and smile happily while holding their eldest daughter, Alejandra. It is precisely her they ask about the youngest of the family: “Where is your sister Carolina?”. “In Heaven,” the little girl answers confidently.

And she was right. On September 23, 12 days after her birth, Carolina passed away due to complications from Edwards' syndrome. Her parents were with her every step of the way and they were supported by their family and the teams of the University of Navarra Clinic in Madrid and the Pediatric Palliative Care from Hospital Infantil Niño Jesús.

How did you find out about Carolina's diagnosis?

- [María Jesús]: In the 12-week ultrasound they saw things that were not right. The screening had already shown a medium or low risk, but the ultrasound showed features indicative of a trisomy: the nuchal fold, fluid around the body, absence of the nasal bone... These are features that do not necessarily remain, but when you see them they indicate that there is something there.

At that time we were told that something was wrong and they were very insistent on doing the amniocentesis. (Editor's note: This is an invasive test in which they take a sample of the amniotic fluid with a needle to detect abnormalities in the baby. There is a risk of harm to the baby, bleeding, infection and early rupture of membranes)..

This test did not sound right to me and when I asked them if the test could change anything, they said no. They just wanted to do it to know more certainty about the diagnosis. They just wanted to do it to know with more certainty the diagnosis. I insisted that I did not want to do the amniocentesis and the next day they told me about a blood test that with a 99 % reliability examines the diagnosis.

I agreed to the test and a week later they sent us the results by email. The truth is that we did not expect at all what we saw. While we waited, we lived a normal life, trusted in God, prayed and made the decision not to investigate anything.

In our hearts we suspected Down syndrome, but we took the diagnosis very well. My sister had come to accompany us and the results arrived just as Juan Pablo was returning home from work. We opened the mail amidst laughter and tears and from that moment on we considered Carolina as a gift from God, even more beloved.

- [John Paul]: Dearest, that's the key. The diagnosis did not change the love that as parents We are sorry for Carolina.

Was it well explained to you from the beginning what Edwards' syndrome entails?

-  [María Jesús]: When I received the results I called my best friend, who is a gynecologist. When I sent them to her she started crying and we knew the diagnosis was bad, because of the three trisomies, Edwards syndrome is the one with the worst prognosis.

My friend explained things to me, but then the gynecologist at the hospital told me the situation in a very harsh way. She pointed out that most babies with this syndrome die in the womb, and if they are born at all, almost all of them die within the first month.

We were pained by the words of the doctors, but we had a peace that was not human, but came totally from God.

How was the support provided by the medical team?

- [John Paul]: When we went to the consultation after the diagnosis, the first thing they asked us was if we wanted to continue with the pregnancy. We were surprised because it is not that we do not want anything, it is just the process of life.

-  [María Jesús]: It is a shame because they told us the figures of abortions in children diagnosed with this syndrome and they are the majority. The impression we got was that they did not want Carolina, that they were waiting for her to die. Any doubt we raised was met with the response that it was a sign that she was going to die.

- [John Paul]: We were surprised because doctors are there to heal, not to fix a problem.

-  [María Jesús]: There was a lack of willingness to care. But we immediately got in touch with a woman who had had a baby girl with Edwards“ syndrome the year before, and she told us about the Clínica Universidad de Navarra's program "The University of Navarra".“CUN accompanies you”. It is an incredible program that has a gigantic team that accompanies you. We have been with them since the 20th week of pregnancy.

Each ultrasound with them lasted about an hour, you could tell that they loved our daughter and that they investigated everything they needed to help us. From August onwards we moved to Madrid to follow up on the last stage of the pregnancy.

- [John Paul]: There we noticed the affection and human quality.

Is there a saint to whom you went to ask for his intercession?

-  [María Jesús]: Not at first. We asked my father, who passed away; we asked St. Joseph... But the saint who we know has interceded for Carolina, without a doubt, is St. Joseph. Padre Pio. She went to Heaven on the same day as Pio of Pietrelcina, and at a very similar hour.

It was also foreseen that Carolina would be born on his feast day, September 23. And in the end what happened was that she was born to Heaven on the same day as him.

Were you confident that the miracle would happen?

- [John Paul]You never lose that confidence.

-  [María Jesús]: We had hope at all times, in fact, we never believed that she was going to die. That is precisely why I think Carolina's life was so joyful and beautiful.

The day Carolina died, even though she was very sick, I genuinely told Juan Pablo that I thought she was getting better. And I didn't say it like a fool, but because I was confident that she was going to be fine.

- [John Paul]In fact, when Carolina was born, and even during the ultrasounds at the CUN, as they told us that there were things that were going well, we thought it was because the situation was improving. Then they explained to us that, within what was wrong, there were things that were going well.

On the other hand, as we thought she could die quickly, we had everything prepared and talked with the CUN to baptize Carolina as soon as she was born. But when she was born, they told us that there was no hurry to baptize her because she was fine. And indeed, we looked at her and everything made us think that she was perfect.

What was the moment of the baptism like?

-  [María Jesús]: The whole family came, including my cousin Jaime, who is a priest. They took us out of the operating room to the delivery room and the baptism took place there. It was a gift because nothing was missing: there were the oil paintings, the white vestments, the readings... It was beautiful.

Another great protagonist of the story is your daughter Alejandra, how did you explain to her what was happening?

-  [María Jesús]: She is very small and when Carolina was born, Alejandra was one year and two months old. However, she was very conscious, she did not understand that Carolina was sick, but that she is her sister. She was at the christening, screaming with excitement.

Then we explained to him that his little sister has gone to Heaven, very naturally. And now he only talks about her. It is true that we have many pictures of Carolina in the house, because we wanted to make sure we had that memory of her.

We did not consider explaining it to him in a specific way, but we did it very naturally. Besides, we are certain that he is in Heaven, so we say it with a lot of certainty.

In fact, when Carolina went to Heaven my cousin Jaime kept telling us that we are the parents of a saint, and it is the truth, it is a source of pride.

How was the moment of delivery?

-  [María Jesús]: It was unexpected. We went for an ultrasound at 36 weeks and they told us that, for various reasons, it was better for him to be born now. So they did an emergency C-section. It happened quickly and we didn't have anything with us that we had prepared, but it was fortunate because we didn't have to choose the date of his birth, which was one of the possibilities and it was very difficult, not knowing what was going to happen next.

The reality is that the birth was impressive, because at CUN we were treated with great affection and professionalism.

What is the relationship with the Hospital Infantil Niño Jesús?

-  [María Jesús]: We were put in contact with them by CUN, precisely. They came to meet us and then brought everything we needed to take care of Carolina there.

- [John Paul]: It's 24-hour care, so you feel cared for too.

-  [María Jesús]: Indeed, the doctor, the psychologist, a nurse and a social worker came. And of course they took great care of Carolina.

Juan Pablo affirmed that “if incompatible with life means that you are going to die, every human being is, because we are all going to die”. Can you elaborate on this?

-  [María Jesús]: It was a difficult situation, because even Christian people and very good people were telling us that it was a shame that Carolina had a condition that was not compatible with life. It's almost as if they were telling us that the 12 days she was here were not life. But life, even if it lasts less than a minute, is life.

- [John Paul]Carolina's life was 12 days filled with incredible love. Maybe there was sorrow, but they were intrusive thoughts that came in a moment and you pushed them away immediately. We really enjoyed the moment of having her, she is our daughter and we will love her forever.

There are people who prefer to spare themselves the pain you have gone through, how do you explain your decision?

- [John Paul]It is that there is no better alternative than to go ahead. Dying in your mother's arms is not the same as dying at your mother's hands.

-  [María Jesús]: It is worth it. We have no merit, it has all been God's and Carolina's doing. And she has taught us that every minute is a gift, she has given us a happiness that I don't know if I will ever find again in this life.

All this does not mean that there is no pain, because we are suffering a lot, we miss her in an indescribable way. It is a very great pain that is accompanied by a lot of peace. Suffering and happiness are not incompatible.

Finally, I personally recommend to any mother or family going through such a situation to take lots of pictures of their children. It seems silly, but it calms your heart.