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:
Whenever a new baby with anencephaly is born, I always think about how it was when I had my little Anouk. I hope that the mother who has her baby now does not make the same "mistakes" I did, that she will 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 (Bible: Luke 10.38-42). Martha was cleaning the house, preparing a good meal, all the things which have to be done. Mary just sat down at Jesus' feet and listened to his teaching. Martha was upset and asked Jesus to send Mary to help her. But Jesus answered: "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."
Through this story, 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
- The pregnancy
- Things you may need after birth that you can prepare now
- The birth
- The life after birth
- The death and the funeral
The pregnancy:
Anticipatory Grief
Grief is an emotional, cognitive, physical, and spiritual response to loss.
We tend to associate grief with what we expect to experience in the future.
But, actually, concerns about loss begin as soon as we recognize that a loss
may occur. "Anticipatory grief" is the name for what people experience when
they know that they will likely face a profound loss. For parents of a child
with anencephaly, it includes all the losses along the baby’s life - not just
the prospect of death. It means grappling with and grieving the loss before it
completely unfolds. Anticipatory grief takes up a lot of room in a parent's mind
and heart. It can take many forms: sadness, tearfulness, anger, irritability,
loneliness, guilt, anxiety, a desire to talk or to withdraw. It may manifest
itself with physical problems such as sleep or memory difficulty, headache or
other physical pain.
Your baby does not need to have died already for you to seek support - the
better the Before, the better the After. Grief support and counseling - either
one-on-one with a trained counselor or in a
support group - can be very helpful
to you during this time.
Source: Courageous Parents Network. Find their complete file about
anticipatory grief
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.
If you already have another child/children, you can find helpful suggestions about how you can help
your child now on our page siblings of a baby with anencephaly.
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.
If you haven't been offered the help of a perinatal palliative care team yet, check out at
perinatalhospice.org if they have
one next to you. Don't wait! Perinatal palliative care offers informed support and guidance
to parents throughout pregnancy and the neonatal period. The key point here is
that the care is for the already grieving parents, not just the affected baby. (Côté-Arsenault)
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. Doctors may not want to stop preterm labor with a
baby with anencephaly, because of possible complications for the mother. Discuss with your ob/gyn
what you want to do should this happen and what are your priorities (reductive amniocentesis or
amnioreduction can be done to reduce the pains and pressure).
As with any other pregnancy, there is a risk for premature labor even if you don't have
too much amniotic fluid.
Things you may need after birth that you can prepare now
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 make a bonnet yourself, the circumference of 9 inches (23 cm) proofed to fit quite well.
We provide the pattern for Teddy's knitted hat that you can see on the picture above,
and crocheted hats.
You can adapt a regular hat by stiching some ribbon on the hat so that it could tie. This makes sure that the hat will stay on well.
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 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...
You may be scared that you will become too attached to your baby if you spend time creating memories and spending time with your baby. But as a mom, you cannot be more attached than you already are. Even if you feel uncomfortable, it is important for your healing to take the time to get pictures and make memories if you wish to do so.
Sufficient Grace Ministries
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.
Now I Lay Me Down To Sleep
gently provides a helping hand and a healing heart to parents experiencing an early infant loss.
Professional photographers offer their time and experience to take beautiful pictures of
your baby and your family. Contact them to find a photographer in your area.
The birth:
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.
Through discussion and advising, the parents and medical team should work together
to develop a birth plan that reflects their values and priorities. Not a rigid protocol,
rather, a document that presents a personalized view of parent beliefs, values,
and preferences under a variety of medical circumstances that informs the medical
team. Even if a document is not made, the most important part is the process by
which the team learns the parents' understanding, values, and decision-making process.
Birth planning is decision-making, a parental role that can be empowering for you
as this baby's parents and provide you a rare opportunity to exert some control
during this pregnancy. (Côté-Arsenault)
(Examples of birth plans: 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.
The following questions and facts may help you and your medical team in your discussions:
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.
Once the birth begins, do you want pain medication?
The way of birth can have an influence on the survival of the baby with anencephaly. The lack of
the scalp and vault of the cranium lets the brain tissue exposed and vulnerable to pressure. We have
noticed that the amniotic bag is playing a protective rule; as long as it's intact, there is less pressure on
the baby's head. It makes sense though to ask the midwife / doctor to keep the amniotic bag intact as
long as possible. You can learn more about this in the Report about the birth
and life of babies with anencephaly.
Do you want to record the baby's heartbeats during labor?
Do you want family or friends with you during the birth?
You may want to consider having a bereavement doula. A bereavement doula provides physical, emotional,
and informational support to families experiencing pregnancy loss.
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 haven't done this yet, check if there is a perinatal hospice programm in your area, for example at
perinatalhospice.org.
A perinatal hospice approach walks with affected families on their journey through pregnancy,
birth, and death, honoring the baby as well as the baby's family. Perinatal hospice is not
a place; it is a way of caring for the pregnant mother, the baby, the father, and all involved
with dignity and compassion and love. It can easily be incorporated into standard pregnancy
and birth care just about anywhere.
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
The life after birth
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.
Be aware that the therapeutic objective may change after birth depending on the baby's health.
Your baby has a birthdefect that will not allow a long life, but your baby is not automatically suffering because s/he has
anencephaly. Many affected babies are calm and peaceful after birth. Pain can occur though, discuss with your doctor
/ palliatif care team what they can offer.
You may want to consider Comfort care options (non-pharmacological options), they can calm the baby and give her/him
warmth.
Here are a few non-pharmacological options of pain therapy in newborns: (Dobbert et al, 2020)
• Swaddling
• Positioning in the frog position (facilitated tucking)
• Non-nutritive sucking, nutritive sucking, breastfeeding
• Non-nutritive sucking in combination with music or intrauterine sounds
• oral sucrose feeding
• skin contact (e.g. kangaroo care)
• touch, massage if necessary, soothing (parental) voice, music therapy
• parental smell (e.g. a small cuddly blanket which the mother carried on her)
• Warming compresses
• Kinaesthetics Infant Handling® (www.kinaesthetics.com)
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.
If your baby is having breathing problems, consider trying different positions, holding your child
differently. Upright or horizontal, the position of the head (chin back or forward) can make a
difference as well.
To avoid infections, 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.
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.
Find many ideas and stories of other families who have been there on our special page siblings of a baby with anecephaly
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.
And 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
Some activities can break down barriers:
I just had my 4 other kids choose their favorite books to bring to the hospital. They read the books to/with her, and then I put her footprints and a little note in each one about how this book was chosen by ______ to read to their baby sister on the day she was born. My kids LOVE their special books now.
Kristen, Valena'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
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.
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.
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 there are exceptions.
A list of helpful books is available on this site.
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.
Sufficient Grace Ministries have a special page about
funeral planning on their website.
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. (find ideas on our pinterest page.
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
Literature
Dobbert, Gubler und Fontijn, Palliative Care in der Neonatologie,
10 wichtige Fragen und Antworten, Pädiatrie 02/2020,
https://www.rosenfluh.ch/44598
Jaquier M, Klein A, Boltshauser E., 2006. Spontaneous pregnancy outcome
after prenatal diagnosis of anencephaly, BJOG 2006; 113:951-953
Côté-Arsenault D. The case for perinatal palliative care and expanded
research. Palliat Med. 2023 Oct;37(9):1286-1288. doi: 10.1177/02692163231203852. PMID: 37787505.
Last updated January 27, 2024
