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Preparation of the birth of a baby with anencephaly

 

"The goal is to add life to the child's days,
not just days to the child's life."

American Academy of Pediatrics 2000

 

After a long time of waiting and preparing, the day of birth will finally be here. It will pass too quickly, but also very slowly, just as the pregnancy did. On the day of the baby's birth, your baby should be your main concern. The time with him or her is so precious that you shouldn’t have to waste time and energy making decisions which could have been made earlier. So prepare everything so that you will have no regrets but will, instead, have as much time with your baby as possible. That time with your baby will become your most precious memory.

Just as each person is different, each person's preparations will be different as well. Here are some suggestions to make it easier for you to prepare for your baby's birth. Choose whatever seems suitable for you and your family and forget the rest.

But first, here are some thoughts we’d like to share with you:

When a new baby with anencephaly is born, I always think about how it was when I had my little Anouk: what went fine, what could have been better. I hope that the mother who has her baby now does not make the same "mistakes" I did, that she does not have regrets as I sometimes have. While I was thinking about this, God reminded me of the story of Jesus visiting Martha and Mary (Luke 10.38-42). Martha was cleaning the house, preparing a good meal, all the things which have to be done. Mary sat down at the feet of the Lord and listened to his teaching. Martha was upset and asked Jesus to send Mary to help her. But Jesus said : "You are worried and troubled over so many things, but just one is needed. Mary has chosen the right thing, and it will not be taken away from her."
We are worried over so many things. So many things could have been done better during the time we had our babies. But God said to me, "Just one was needed" when Anouk was born. That "one thing" was to give all my love to my baby. I didn't give a bath to Anouk. I didn't even try to nurse her. But God comforts me and says, "Just one was needed, and you have done it." The love I gave to my daughter will never be taken away from her!
Monika

For other mom’s just starting their journey, I am sorry for you. The one thing that I didn’t realize until it was nearly over was that we were focusing on what Austin didn’t have. All the while, we should have been focusing on what he did have and what he did bring to us. He had everything my other children had, but most importantly, his soul was just as beautiful and perfect.
I can’t wait to get to know that beautiful soul one day! His life, no matter how short or how drug out the pregnancy seemed to get, it was still his life and he was entitled to it and as a mom it was my job and honor to be there for him.
April

We were so thankful for the time that we had to bond with Jaron before he was born. I think that if we had not known ahead of time, we might have taken the time for granted. We would have been in complete shock on his birthday and would have been left with regrets. Because we had time to bond, we took advantage of every day with Jaron and could plan ahead for special moments at the hospital, which made the day very special and "ours."
Liz

Carrying my baby to term gave me the opportunity to experience grace. Not only did I experience the holy spirit’s gifts on a new level, but I realized that had I terminated my pregnancy, I’d have taken Austin's dash away from him. He lived 2008-2008, but what was most important was his dash. He lived it and fulfilled a divine legacy. He still would have meant the same to me had I terminated, I’d have loved him unconditionally; however, I don’t believe his dash was meant completely for me. He has touched thousands. I had no idea how powerful his life would be and what I would have robbed from him had I taken his opportunity at life away from him. Grief would have come to me either way; but I sleep peacefully each night knowing I have made a faith filled decision and without a doubt pleasing to God. When you please God, you please yourself. It is a promise.
April

 

- Before birth
- The life with a baby with anencephaly
- His death and funeral
- What you can do for your family and friends

 

Before birth:

After birth, you'll have only a little time with your baby. But don't forget that your baby is already alive now! Try to enjoy every moment you have with him or her now. Every kick is so precious. Learn more about different ways to bond with your baby.

A special trip or picnic while you're pregnant will become a very precious memory.

If you know the sex of your baby, give him or her a name. This will help you to bond with your baby. For other people, naming your child will be a clear signal that you’re carrying a beloved daughter / son who deserves a name, not just a “fetus with a birth defect” (or even worse…)

Surround yourself with friends who support your choice to carry your baby to term. The time ahead won't be easy; you'll need people you can trust and confide in, before whom you'll not have to justify yourself and your choice.

Choose an OB/GYN you can trust and confide in, one who respects your choice.

Decide whether you want to give birth in a hospital, a birthing center or at home. Everything possible, but make sure to be surrounded by professionals.

Write down a parenting plan (birthplan). (Sample Advance Directive Birth Plan and more links)

A parenting plan contains all your wishes for the delivery and post partum period. Don't try to write down every smallest detail, but build up a general guideline. Write it as simply as possible. Everybody should be able to understand what you want, even in a hurry.

And then make sure that everybody and every department / unit of the hospital / birthing center who could be involved has a copy of your parenting plan. So even if your doctor or your midwife will not be there at birth, you can be sure that the medical staff will be informed about your wishes.

Here are some points to help you prepare a parenting plan:

Think over how you want your baby’s birth to happen. You may want to discuss the choices with your ob/gyn or your midwife.

The birth of a baby with anencephaly sometimes doesn’t start naturally at term because your baby's diminished brain is not producing the necessary hormones. If labor doesn’t start naturally for you, when do you want to induce, and how? There are different possibilities. Ask your ob/gyn to advise you. See the report about the birth and life of babies with anencephaly.

On the other hand, in about one quarter of pregnancies with a baby with anencephaly, the mother develops too much amniotic fluid, a condition called polyhydramnios. In case of polyhydramnios, labor may be triggered prematurely, or waters may break. Usually doctors don’t stop preterm labor with a baby with anencephaly, because of possible complications for the mother. Think about what you want to do if this happens to you.

Once the birth begins, do you want pain medication or an episiotomy?

Many mothers wish to have an elective c-section to give the baby a better chance of survival. Think over if you really want that.

As an L & D nurse, I would avoid a c-section if at all possible. The operating room is not the place you want to spend your only moments with your infant. And if your baby only lives for minutes or hours, you don't want to spend it looking at your baby while you are having a c-section. If this is something you must do, then God will bless it, but I would attempt a natural delivery if possible so the time you have with your baby is sitting up in a bed.
Mary, mom to Adelle

How do you imagine your baby's life? What do you want the doctors to do? What measures you don't want? This is your baby, not the hospital's. Only you can decide what will happen with your baby. It can be helpful to meet the hospital's neonatologist before birth to discuss the hospital's possibilities and your wishes. He can give you the answers to many questions you have and together you'll find a way. You can ask him, for example, to make the routine controls (weighing, for example) only after you were able to hold your baby in your arms for a while. These wishes should be in your parenting plan as well.

Most hospitals put at your disposal a room apart from the maternity ward, where you'd hear the cries from other babies. Ask if this is possible in your hospital.

Your baby may live long enough to take him home from the hospital / birthing center. Consider contacting your local perinatal hospice, they will help you with all your questions and needs.

I also recommend calling a pediatric hospice service as a "just in case" your infant lives long enough to take home. If you get to take your baby home (I did and it is such a blessing) and the infant dies at home without hospice care then (in the US) there will always be a police investigation... which you won't want to deal with after the death of your baby. It is normally short, because the cause of death is obvious, but they will have to do one non-the-less, because it is policy every time an infant dies at home. We set up the hospice care thinking we would never need it,and were so over joyed to get to.
Mary, mom to Adelle

If you want to give birth at home or in a birthing center, search for a midwife who will attend you and take care of you during the post partum period.

If you already have older children, do you want them to meet their little sister/brother? Ask them what they want? Children often know very well what they want and they also know their limits. Accept their decisions.

When we got the diagnosis of our daughter, we decided not to hide anything from our other children (ages 6, 5 and 3 years). When Anouk was born, it was very important for all three of them to see and touch their sister. This way, she became real for them. They could see with their own eyes that Anouk was so sick that she couldn't stay with us. This helped them understand why she died.
Monika, Anouk's mom

Choose a confidant who can take your older children to the hospital and take care of them. Choose someone who knows your children well. Children may have a lot of questions. They may need to be comforted. But you won't be available for them as usual.

You may want to prepare a special gift (e.g. drawing, stuffed animal, ...)the older sibling can bring to his baby-brother, baby-sister.

For older siblings, consider having a cheap camera for each of them, so they can take their own pictures, capture moments that are important to them.

Who do you want for yourself? Who do you want to see your baby alive?

For us, this was a difficult decision. On the one side, we wanted to have every second with our daughter to ourselves. We didn't want to share the brief moments we had with her with anybody else. But, on the other hand, our parents wanted to meet their grandchild. I'm glad that they could meet her alive, glad that we can share memories now. But I am also glad that we didn't have too many other people around so that we were able to enjoy our time with Anouk just as we wanted.
Monika, Anouk's mom

The hospital will provide blankets and outfits for your baby, but as you will have only a short time with him or her, you may want your baby to wear outfits you like during this time. Buy or make some beautiful outfits for your baby. Consider that on all the pictures you'll have of your baby, your son or daughter will be in those outfits. Chose a smooth and soft cloth. Babies with anencephaly are often very small, even born at term. So choose outfits for preemies or the smallest size available in regular shops. If a visit in a baby shop is too difficult for you, order online. On Bonniebabies you will find several patterns for preemies.

You can knit or sew or buy a little bonnet which the midwife or nurse can put on your baby's head before she'll put the baby in your arms. The bonnet hides the opening on the baby's head. This concealing cap will allow you to discover your baby as he or she is and not to focus only on the birth defect. You may also want to protect your baby’s head from the looks of inquisitive people.
Take bonnets of different sizes and consider that the heads of babies with anencephaly often are VERY small.
If you want to knit, crochet or sew a bonnet yourself, the circumference of 9 inchs (23 cm) proofed to fit quite well.

You may want to stich some ribbon on the hat so that it could tie. This makes sure that the hat will stay on well.

You can take a special blanket with you so that the nurse or midwife will wrap your baby in your own blanket and not the white one from the hospital. To create a special blanket for your baby may be a way for a grandmother or other family member to do something for your baby, to show her love in a practical way.

Prepare a list of phone numbers of all those you want to call after your baby's birth.

Prepare a list of the keepsakes you want to make of your baby, and a bag with the material to make them. Keepsakes are so important. It's worth going through all the possibilities to create keepsakes of your precious baby. Don't forget, you can always throw away things you don't like, but you cannot remake what you didn't do...

Prepare a list of the pictures you want to take of your baby. (Baby with mom, baby with dad, baby with mom and dad, baby with siblings, etc.). Pictures will be the most important memories you will have of your baby. Advice for taking pictures of dying babies

Consider beforehand whether you want to see your baby with his or her head uncovered. Parents often fear this, but most who do view their baby's head are glad they did so. The baby still looks beautiful, even with the birth defect. We have a private page where you can see some of those pictures, lovingly taken by their parents. Please e-mail us to get the keyword.

It's not easy to know if you have to prepare anything at home for your baby. Most babies with anencephaly die within the 3 first days of life, but some live up to 10 days.

A list of helpful books is available on this site.

 

The life with a baby with anencephaly

Don't be afraid to ask your nurse or doctor all the questions you have. Tell them what you want. Don't hide your feelings.

Give yourself time to be with your baby. Every moment is precious. Take one moment at a time and relish it.

If your baby lives long enough to need milk, you can try to breastfeed him or her. If your baby is too weak to breastfeed, you can give some milk on a spoon. Several parents have made very good experiences with a Haberman feeder that was designed specially for babies with sucking difficulties.

You may want to protect the opening on your baby's head. Many parents recommend a procedure like this:
- Work with sterile equipment and wash your hands thoroughly, using antibacterial soap and a fresh, clean towel.
- Make sure the room is plenty warm
- Cleanse the opening with warm, sterile saline solution.
- Apply a non-adhering dressing/gauze on the opening. ADAPTIC® Non-Adhering Dressing worked well for many babies with anencephaly. It is designed to help protect the wound while preventing the dressing from adhering to the wound and to minimize pain and trauma upon removal.
- Wrap gauze bandage roll around the baby's head to keep the dressing in place.

 

His death and funeral

Nobody likes to think about death, particularly about the death of a baby. We bury our grandparents who have a rich life behind them, but nobody should have to bury his or her own child.

Nevertheless, I can only recommend you think about funeral arrangements for your baby now. Try to prepare the most important things now when you have a clear mind, because after your child's death, you may be emotionally unable to make such important choices as where and how to bury your child. It takes time and emotional energy to make all the arrangements at the last minute.

Here are some questions to consider:

Do you want a viewing for your baby at a funeral home? A funeral service? Religious or not? Will family be involved in any service and how? Do you want your baby cremated or buried in a family plot? If you chose burial, what kind of coffin will you want? If you choose cremation, what do you want done with the ashes? Do you have any music or mementos you would want to share? Who do you want to be with you? Do you want photos?

To prepare your baby's funeral doesn't mean that you don't trust in God. All the preparations can be blown away in an instant if your baby is born healthy. Hope for the best but prepare for the worst.

In many places, funeral homes do their services for free when a baby dies. If you walk in the door willing to pay, they may not volunteer the information, you have to ask. All they can do is say no.

Infant Urns From Grief Watch
Handcrafted infant urns, memorial products, and compassion for families dealing with the loss of an infant.

Resources to help you preparing your baby's birth (links to parenting plans (birthplans) and more)

 

What you can do for your family and friends :

If you don’t feel comfortable calling all your family and friends to give them the latest news about your baby, you may want to choose someone who can do it in your place.

For us, getting someone else (some very good friends) to act as news distributors and as a point of contact for enquiries about how we are was very helpful. It meant everyone who wanted to know how we were getting on knew, and we weren't bombarded with questions. Also we wrote an email of news every so often that they distributed for us. They also added people to the list. Those emails ended up being forwarded all over the world as many people prayed for us and for Jonathan who was in hospital.
Tim, father to David and Jonathan

Share special moments with them during the pregnancy.

I took my mum to see one of my sonogram visits as she'd never seen one before it was her only glimpse of her grandson alive, I wish it had been face to face.
Lea, mom to Ben and Nara

Ask people to make or buy something for the baby.

We asked the grandmothers to make Joey's burial outfit. They crocheted a jacket, blanket and cap. They also bought a sleeper for him to wear underneath
Lyn, mom to Joey

Ask them to meet the baby after the birth.

Make memories for the other family members.

I put together a small photo book of Joey's pictures to give to both sets of grandparents; sort of like a "grandparents brag" book.
Lyn, mom to Joey

Organize special events on the baby’s anniversary.

We hold a celebration mass and breakfast on the anniversary of Joey's birth. Since we will not be able to have "birthday" parties for Joey, it gives us and others the chance to celebrate his life
Lyn, mom to Joey

Involve family and friends in birthday celebrations.

My son and the babies share the same birthday. 10 years to the day Dec 7th, I have a smaller cake and let a family member blow the candles to thank her for choosing me to share the few hours of her life.
Josie, mom to Minna and Maranda

Show your family and friends that you don’t mind speaking about your baby.

I soon learned to bring up the subject of "Courtney" and I found that they would start asking me questions. They were just afraid that they would hurt me by bringing up the subject.
Karen, mom to Courtney

 

How I dealt with family and friends

 

 

Whatever clouds you face today,
ask Jesus, the light of the world,
to help you look behind the cloud
to see His glory and His plans for you.

Billy Graham

 

 

Last updated June 23, 2015