Help for families who had lost children from anencephaly condition?

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Sarabande

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I recently learned of a family who was pregnant with a little boy. A number of weeks into the pregnancy, it was discovered that the child had acrania or anencephaly - the absence of a skull. Because there is no skull protecting the brain, it becomes damaged and malformed. They never survive after giving birth or they die while in the womb. Does the Church have any support groups to help families deal with something like this? I’m thinking especially for mothers who would have to give birth to these babies which would inevitably die, especially if they have to give birth vaginally the the brain is crushed while going through the birth canal. I can only imagine the psychological effects this would have on the mother.

Thanks!
 
Sarabande said:
I recently learned of a family who was pregnant with a little boy. A number of weeks into the pregnancy, it was discovered that the child had acrania or anencephaly - the absence of a skull. Because there is no skull protecting the brain, it becomes damaged and malformed. They never survive after giving birth or they die while in the womb. Does the Church have any support groups to help families deal with something like this? I’m thinking especially for mothers who would have to give birth to these babies which would inevitably die, especially if they have to give birth vaginally the the brain is crushed while going through the birth canal. I can only imagine the psychological effects this would have on the mother.

Thanks!
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I’m so sorry. I don’t know about the specifics for this, but I suggest looking into a pre-natal or peri-natal hospice program. Here’s a site that may help them find support. People involved in such hospice programs are frequently pro-life Catholics (or others of strong Christian faith) with the medical community. perinatalhospice.org/Home_Page.html

This must be very difficult for the whole family. I know there have been old threads on this topic with one member here having gone through a similar experience. If you search old threads, you might turn up more information. There may be some people at your parish or in your diocese that can help also, but they may not have the specific experience of expected death of a newborn. My prayers for you, this family and their very special baby. :gopray:
 
Thank you. I actually don’t know the family personally. They are friends of a friend of mine, but when I found out about it, it just tugged at my heart because I’m at the very early stages of a pregnancy (I found out just on Thursday) and so much could go wrong at this stage… I just couldn’t imagine going through what they have experienced. They do need our prayers
 
I am the mommy of a baby boy, born one day before your post, with anencephaly. We chose to induce labor for my health, and as a sign of mercy for our child, who was suffering in the womb. Doctors say these babies don’t feel pain, but I saw on the u/s screen a baby not swallowing or ‘breathing’, etc…

Anyway…I wanted to make contact for my son. Jonah Michael.
 
There are sites also set up for parents who make the heartbreaking choice, as we did. Make sure you let them know that no matter their decision for their child, they are loved, and I am praying for them.
 
purplesunshine said:
babyfaithhope.blogspot.com/ here’s a blog of a woman with a baby who suffered that.
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What an awesome sight!!! Thank you for sharing it! I had two children who died before birth. My daughter died at 31 weeks and was downs. I had the hardest time telling people that she had downs because they would say “It was meant to be and maybe it was better that way.” I felt that she was made perfect in the eyes of God and I would accept any gift He would give us. Her downs did not make her less perfect and I wouldn’t have wished her any other way. I would have loved to have been able to hold her living body, but God chose to take her first. Our next child died before birth also. He measured 14 weeks but was born 16 weeks into the pregnancy. Our youngest child is just five months old. She is our joy and we know that God has blessed us. I have learned to cherish every moment of my pregnancies. Each day I was pregnant was a day my child is still with me and I was thankful!
 
Sarabande said:
… so much could go wrong…
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I too had friends who went through such terrible tragedy. Why would God ever allow such tragedy as the terrible deformity and death of their son who never had a chance at life at all? It had left their hearts bleeding with sorrow…
We all grieved for them and hugged our own children a little closer, but what did we know? We never saw the whole story, just that little piece of it.

The whole story was that once upon a time God called an angel over: “You see those two people down there? They’re very good people and I am going to give them the opportunity to become very great people, but I know that they won’t think that they are up to it at all. Your job is to open their hearts and convince them that they are up to it!”
The angel looked down at the couple. Surely God had to be kidding: “How?”
“You’ll be back here in no time at all. You’re going to be their baby, but you’re not going to stay, you’re not going to live; you’re going to come right back here.”

The angel was back in the blink of an eye: “That was terrible! I should never have left them! Those poor people have such broken hearts!”
“Do they have broken hearts, or do they have open hearts?” God asked him gently.

The angel watched the couple bury their son. He watched the woman dismantle the room she had lovingly set up for her new baby and cry as her husband comforted her. It sure looked like broken hearts to him.
“It is everyone’s decision in life to choose to live with either a broken heart or an open heart,” said God lovingly, “wait and see.”

Then one day on the other side of town a child was born with some serious health problems and his single mother could not even hardly care for herself, let alone a child, let alone a child with serious health problems.
His caseworker said “I can find no one for this child because of his health problems”
and the broken hearted woman said “What about me? His health problems aren’t really all so bad…”
“You’d better have a long talk with your husband… a long LONG talk with your husband!” the caseworker replied.
The broken hearted woman and her broken hearted husband talked for a long long time, but they brought home that child with special needs, and then another, and yet another…

The angel concluded that these good people had become great people indeed, just as God had said they would. They were a great gift to this earth. Indeed their hearts had been broken, but broken wide open beyond the hearts of everyone else in town, and their lives had been filled with children and their hearts had been filled with love beyond the hearts of everyone else in town…
and the angel saw that God had known what God was doing all along after all.

I was there at the hospital the day their infant son was born and died all those very many years ago. Maybe I was just exhausted, maybe I was just crazy, maybe it was something I ate… but honest to God I could have sworn that I saw…
an angel.
 
Thank you for that wonderful post former Catholic. I believe there was an angel there that day. When I was giving birth to my little Theresa and Joseph, I felt God with me like I have never felt him before. I Would never want to go through the pain and incredible sorrow of having to bury another one of my children, but I miss feeling God so close to me. So many people don’t understand why God allows suffering, but I do. I know that I would never have agreed to become close to him had I not suffered. I know my husband would never had allowed us to have six children had we not buried two and then my little Isabella would not be here. I would have loved to have my Joseph and Theresa and raised them, but God decided I needed full time prayer warriors. The amazing part is that your relationship doesn’t stop once your children have died. Your love for them also grows with each passing day. There is an anticipation to understand how their little lives changed the world. We pray for them and ask them to pray us so that one day we may join them in heaven and better understand the wisdom of God.
 
Lorik said:
So sorry to hear this news. I’ll pray for them. This is a really good website: benotafraid.net
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Excellent website! We always agreed that we would raise whatever child God gave us. We didn’t know that our little one had downs. All her organs were working fine on our level II ultrasound. We never really found a reason for her death. When I became pregnant with Joseph they wanted to run a tons of tests and I said “No, not unless they can help him live.” I would never terminate a life and I was open to have him just as God made him. Our heart broke again after his death, but I would never do any of it any other way. I would go through it again if I had to. I now know that suffering is not something to fear, it is a challenge to grow.
 
bejonama
Wow!!! I have only gotten to read a little. How amazing! I will have to go back and look again when I have more time. Thanks for sharing!
 
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