Go to content; Go to main menu; Go to languages.
Menu

Bonding with a terminally ill unborn

 

By Monika Jaquier

 

1. Introduction
2. About the importance of bonding
   2.2 Is a baby with anencephaly able to bond?
   2.3 Isn’t it contradictory to bond with a terminally ill unborn?
3. How to create a bond
4. Before birth
   4.1. Feelings
   4.2 Hearing
   4.3 Touch
   4.4 Sight
   4.5 Daily life and common experiences
   4.6 Ritual
5. After birth
   5.1. To experience birth
   5.2. To meet
   5.3. Life with the child
   5.4 Create keepsakes
   5.5 Ritual
   5.6 To let go
   5.7 To say goodbye
6. How bonding can be influenced
7. Conclusion
8. References

 

All I could think of was, ‘Why God, did you give me hope, just to take my son?' And I felt like he was saying, ‘Would you have rather have done it without hope?' And I wouldn't have because I wouldn't have done everything that I did do to try to connect with my son before he was born.
Heather, mom to David Allen

 

1. Introduction

When parents get the diagnosis of anencephaly or any other fatal birth defect or illness for their unborn child, it is one of the most traumatic and shocking events in their lives. Nothing is as before anymore.

A baby epitomizes future, growth, family, hope, promises. But all of a sudden every one of those words seems hollow, their realisation impossible. This baby will never grow out of his rompers, never get his first tooth, never take his first step. There will be no family picture at Christmas, no first day at school and no party at majority.

It seems like if future has been robbed. The hope to be a family.

The baby is "incompatible with life"; it will certainly die, if not during pregnancy or birth, then a few hours or days after.

But is really everything lost now?

In “Welcome to Holland” Emily Perl Kingsley describes her experience of raising a child with a disability as a planned trip to Italy that ends up in a very different place: Holland. I’d like to adapt her story to the situation of a family who is expecting a child with anencephaly:

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans; the Coliseum, the Michelangelo David,the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

Finally, you are on the train to Italy. But soon after departure, the loudspeaker says: "Ladies and Gentleman, we welcome you on our train to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But you took the wrong train. It will drive to Holland and there is no way to change destination.

And now? Should you get off the train at an unknown town, a place that will still bring disappointment, but seems to be the easiest solution? Or should you stay on the train and wait to arrive in Holland?

The nice thing about train trips is that you can watch out of the window. At first it seems as if the landscape is drifting past so quickly that you cannot see anything. But if you look closely, you begin to recognize details;a very special flower garden, children playing outside, a path leading right to the sunset. All those things have always been there, but we didn’t see them before because we were focused on the destination only.

The train is driving unalterably in the direction of Holland, but slowly we realize that if we cannot change the destination, we can change the way we live and feel about the journey.

Meanwhile, everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that fact will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about the trip to Holland.

An adverse prenatal diagnosis forces parents to have a new look on their unborn child. To acquaint oneself with that image; to "tame" it is a hard way. It’s about the reconstruction of the broken bond between the child and the parents.

"This pregnancy, I had been waiting for and looking forward so much, became like a nightmare for me. Before I would always caress my stomach, talk to my twins, but suddenly I became unable to do so."
Andrea

Parents who decide to carry their baby, to continue the pregnancy and take time to love their child, are on a journey for which there are no tour guides and no brochures…

 

2. About the importance of bonding

Bonding is seen as an elementary need of a child. It already begins in the uterus when the baby perceives the motherly environment; like her voice and heartbeat or the smell and taste of the amniotic fluid.
The child needs that bond to the mother, but for the mother it as just as important to create a bond to her unborn. Studies have shown that the stimulation of a prenatal bond has positive consequences not only on the baby but also on the mother. They would have more self-confidence during the birth, experience it as "easier than expected" and would have a higher opinion of their (healthy) baby. (Van de Carr 1988, Manrique 1998). Those consequences are more than desired for parents of a child with a birth defect.

The bond between a mother and her child is a unique relationship. It can be intensified by all the different ways to enter into contact and show affection. This can be done early in the pregnancy..

Not only can the mother create such a bond to her child but also the father, siblings and other family members or friends.

 

2.2. Is a baby with anencephaly able to bond?

Many doctors have a very low opinion about the abilities of babies with anencephaly. They will tell you that due to the lack of brain structure, such babies have no or very poor abilities, which include deafness, blindness, and lack of consciousness. So why bother with bonding with a baby that cannot feel anything anyway?
The personal experiences of affected parents shows a very different picture. When asking them about their baby’s reactions to movement, voices, music, caress, ultrasound, etc., they will tell you that their babies did react, especially during the pregnancy. We are not pretending that an affected child can do everything just like a healthy baby, but there are abilities that contradict the medical opinions.
And don’t forget that a relationship is not only about competences but a lot about feelings. Love is given with the heart and there is no need for a perfect brain to get love.

"I bonded with Julie before she was born, and that was a choice that I made. Holding her in my arms was wonderful and needful and bonding, but it was not the beginning. I suspect that her physical limitations were great; she moved some, but not much, in utero. She didn't seem to respond to voices or pressure. I suspect that she would have been both blind and deaf and unable to move much. I don't know what cries or other noises she could have made, but for me those things were not the point of bonding. Let me clarify: I wanted those things. I wanted desperately to hear her voice, feel her move, look into her eyes, nurse her. But I was not given those chances and, as it turned out, I didn't need them to love my child and feel joy at her birth. This comes down to faith and love, and opening your heart to accept what is instead of only yearning for what could be. Bonding between parent and child is two-way. In the case of a child whose responses are spiritual and not so much physical, the impetus lies with the parent. We connect to her, and then we can feel her."
Bridget, mom to Julie

"Just carrying him in my womb, feeling him and knowing that he could feel and understand my love, even though the doctors told me that he couldn’t feel anything, was wonderful. I can assure you that they can feel the love and affection that we transmit to them."
Lily, mom to Angel

 

2.3 Isn’t it contradictory to bond with a terminally ill unborn?

"To know our baby, to approve our bond to him, makes possible to let him go – first on a material level, then on an emotional and spiritual level. It’s the best condition to create sooner or later new bonds… Memories help us during our grief and facilitate the overcoming." (Hannah Lotrop, 2000)

A life-threatening diagnosis like anencephaly often produces a break up in the beginning bond between the parents and their unborn. But when parents decide to continue the pregnancy, not only can it be seen how the relationship to their child is being restored, but also that it gains in intensity as it would never have otherwise.

"I honestly don't know if my grief would have been any worse or better had I not bonded with her. I think my grief was easier because I understood that she had anencephaly and I had several months to prepare for her funeral and go through the stages of grief and come to terms with it."
Julie, mom to Emily

"We had four months to prepare, and I felt that was just about the right amount of time for us. … I had only one chance to love Emily while she was still in the world. Only 20 more weeks. We tried to take advantage of all of them."
Jane, mom to Emily Rose

 

3. How to create a bond

There are many events during a pregnancy that determine the rising bond between parents and their child. To name just a few, it begins with the planning, the confirmation and the approval of the pregnancy. Then come the baby’s movements and his face on the ultrasound screen, the realization of the child as an independent person. And of course, we have to "work" on becoming parents.

When we build a relationship with another person, we first try to get to know the person and we let the person know us. We exchange information. This is done by using all of our senses. We look, speak, listen, touch, and smell. We let our feelings work, think, give, and take.

To create a bond to an unborn child, we do just the same: we build a relationship. We need to use all our senses and feelings to recognize the baby as a precious person and get in contact with him.

While searching for information about prenatal bonding with a terminally ill baby, I realized that those who know the most about that topic were the parents themselves. They "have been there", traveled on that road and can give the best information and advice. So I’ll give them the voice. I tried to show as many different ways as possible, but the list of course is not exhaustive.

 

4. Before birth

 

4.1. Feelings

Approval of the diagnosis

"This wasn’t the easy decision it might have been. We talked cried and prayed long and hard before deciding to carry on with the pregnancy - it was one of the toughest decisions we’ve ever had to make - in fact I think it was the toughest.
But it was probably also the best one we’ve made. We knew incredible joy in giving Ajani the best life he could have ever had, and lavishing love on him while we could."
Simon, father to Ajani

"Once I let go of that decision and I knew I would carry her until God took her home His way -- I then knew that I had to enjoy every day that God gave me with my daughter. I tried to let go of all the thoughts about what I would not be able to experience with her and instead tried to make the most of the days we were still together."
Kay, mom to Alexandra

To write down your feelings and thoughts can be most helpful when you grow into the rule of being the parents of a baby with anencephaly.

"I had journaled from the beginning of my pregnancy monthly, but after his diagnosis, I began to journal weekly. I knew I never wanted to experience this again, but I also knew that I never wanted to forget a single moment – I wanted to remember the bad along with the good and share his story with my other kids in their future."
April, mom to Austin

"I spent a lot of time journaling my thoughts and feelings. I tried to just take each moment in and enjoy my time with my baby. I knew too soon he would be taken from me and I would no longer have him."
Liz, mom to Elijah

"Once we learned that Jaron was not going to survive, we started a count the days that we had with him. We counted each day and thanked God for the time and the blessing of Jaron's life. We kept journals of how Jaron's life was changing us and our family/friends. Although we couldn't even hold him, it was clear that his life was having an incredibly powerful impact on us and those around us."
Liz, mom to Jaron

For many parents, a very important part when establishing a bond is to give the baby a name. The name helps to see the baby as a person with whom a relationship can be built.

"The first thing that we did to bond with Jaron was to give him a name. I think that this was one of the most powerful parts of our bond with him. We chose a name that was less common so that we could feel that it was uniquely attached to our baby. We also gave him his father's middle name as a reminder and acknowledgement of the bond that daddy had with him. We asked everyone to refer to Jaron by his name to encourage them to acknowledge his "personhood" and to help to identify him as a person. This was key for us--for our own bonding process and grieving and it was key for those around us."
Liz, mom to Jaron

"My husband and I asked to be informed of her sex as soon as it would be possible to view. It allowed us to name her rather than wait for the birth and to create a bond with her – rather than saying "it" we were able to say "Baby Girl / Baby Em" with love."
Karen, mom to Emily

 

4.2 Hearing

Let the baby hear his environment.

"I sang to her and caressed my tummy where she kicked. We laughed at the way she would kick out at certain noises. Her brother’s Thomas the Tank engine pull along train made a loud "choo choo" noise and she would kick and move quite vigorously when she would hear this. Also, when he would sit on my lap she at times would kick so hard she would push him off my lap."
Karen, mom to Emily

"When I was pregnant she loved it when I had music on & it was like she was actually dancing to the music."
Jane

"My Daddy loves music. Mommy says that he is a "music snob." (Actually, Daddy says that too.) Being a music snob, Daddy has always dreamed of sharing his passion for music with his kids. So the day after learning how sick I was, Daddy was determined that I would still get to share in his love for music no matter what! He ordered a special set of belly-headphones for mommy and had them shipped extra-fast. Then, he immediately started making a special playlist of songs that he wanted me to hear!
Before all that, Daddy had taken me (and a very skeptical Mommy) to see a band called Porcupine Tree in Buffalo with Uncle Chris and Aunt Mary. Chris and Mary didn't know about me yet. But just before the show started, Daddy told them how excited he was that this would be my very first concert!"
Jon father to Dylan

Let the environment hear the baby.

"Some of the ways I bonded with McCoy was talking to him. My husband loved talking to him. We had a monitor that we could record his heart beats."
Tanaca, mom to McCoy

"When I was in my final trimester, I would take a quiet hour or so each night and listen to the sounds Joyann made moving inside my tummy. I used a little baby monitor that was supposed to pick up the baby's heartbeat, Bebe sounds monitor. Anyway, I don't know if I ever definitively heard a distinct heartbeat, but I did hear lots of other sounds of movement and I now cherish that quiet time where I could focus in "just on her"."
Jewell, mom to Joyann

Friends rented a Doppler for us to hear Emily’s heartbeat at home; the kids love to “play doctor” and hunt for her heartbeat.
Laura, mom to Emily Jean

 

4.3 Touch

"Once I was feeling him move, I would set 30 minutes aside each day for my quiet time with the baby and go and lay down in my room with my hands on my stomach and just feel him move. I would talk to Isaac and tell him how much he is loved and growing so well."
Megan, mom to Isaac

"When I was pregnant I would try to bond with him by lying in a warm bath tub and watching him move and I would rub his feet when he moved. He loved when I laid in the bath."
JoEllen, mom to Michael

"The few months that I did have my son in my womb was the best time of my life now that I look back. He did not make it through the delivery. But I will never forget the way he moved and how we would play right before bed. He always let me know he was still there."
Rachel, mom to Michael

To feel the baby is an easy way to bond for fathers and siblings.

"I would let anyone feel Joyann kicking if they wanted to. I felt it would help them realize she was ALIVE in there. My husband would talk to her and push on my stomach and she would push back out as well."
Jewell, mom to Joyann

"His biggest admirer is his big sister Addie. She loved him from the beginning. She would play with him while he kicked her from inside me:) Those precious moments I will never forget."
Jessica, mom to Boston

"Also, every night I rocked my 3 year old daughter for awhile and Krista and I would "rock Emily to sleep". It was a neat way for me to bond with both girls and Krista would rub my belly and she really felt like a part of the experience."
Julie, mom to Emily

 

4.4 Sight

"The ultrasounds were special times to watch Jaron move and to talk to him. We loved seeing his growth and seeing his little movements. We weren't sure how he would appear physically after his birth, but he looked so "normal" on the ultrasound. It helped us to further see him as a little person and to begin accepting his condition. He was not an anencephalic baby. He was a baby with anencephaly."
Liz

"We also invited each Grandma to come in to view an ultrasound of him kicking and moving, etc. We wanted to give each of them an opportunity to see him alive."
April, mom to Austin

"My husband was not able to truly bond with Gabriel before he was born, aside from our 3D/4D ultrasound. Once he saw him looking so "normal", I think it relieved him and he was able to start the bonding process."
Chantell, mom to Gabriel

See the development

"Then every month we visited the doctor, they let us see the ultrasound and my husband came every time with me ever since. We got to see Jaden grow a little bit more each time. At the last visit, we got to see him in 3D, so we got a glimpse of his face. He had chubby cheeks."
Vi, mom to Jaden

 

4.5 Daily life and common experiences

"I spent my pregnancy with her trying to carry on as best I could. I talked to her. I wrote to her. I signed cards with her name too. We took her to a college girls basketball game. I planted flowers with her. And, what moms and daughters do best, I took her shopping and she even picked out the dress she would wear on her birthday."
Kay, mom to Alexandra

"I also tried to shift my thinking. Instead of thinking about everything in life she was going to miss, I tried to think of what she was experiencing. For example: I went sled riding down the hill, once, when I was about 7 months pregnant with my 2 other daughters so that Emily could go sled riding. I made sure I had plenty of chocolate and caramel :) so that I could make sure she had some...etc., etc."
Julie, mom to Emily

"I came across a photograph recently of when we had been on a family vacation and I was very pregnant at that time and we went to a place where there was a lot of petrified ancient wood & did a LONG hike. It was extremely hard for me to hike with being pregnant and with that huge bag of water I was carrying,(and with it being very hot out) but I persevered, slowly and catching my breath as I went and sipping on my little bottle of water and I eventually made it all the way back. My family had long since left me behind and ran ahead...after a while, when I didn't come back, they went looking for me and finally I emerged victoriously. I felt that Joyann was experiencing the beauty of that hike with me. I felt like she was there with me and it's something I now cherish; that and how I didn't give up and kept on going until I completed the hike. It may sound silly, but it means a lot to me that we did that hike together."
Jewell, mom to Joyann

"I learned to crochet while pregnant with Kevin so I could make him a special blanket for his burial. I would put the girls to bed each night and prop up in my bed to crochet his blanket. Kevin would stretch out and kick more while I was laying there making his blanket. Now when I crochet I think of the special time while Kevin was in my womb growing and alive."
Crystal, mom to Kevin

"We also made a trip across the country for some time to bond as a couple, to escape the unending attention and concern from our friends/family, and to just enjoy having Jaron with us."
Liz, mom to Jaron

 

4.6 Ritual

"We had a baby dedication at our church for Jaron before he was born. Rather than making an agreement to raise him in the Lord, we stated that we would love him and provide the best possible care for him that we could while he was in the womb. We stated that every day with him was a gift from God and that we would not take even a moment for granted. Our family and friends were there to agree to support us in this. We made dedication announcement/invitations for this event, which was something that we would have done for a child that was living."
Liz, mom to Jaron

"We were given a "prayer baby shower". The invitation read "Let your prayers be your gift". Over 200 people gathered for a structured service led with very specific prayers and soft music via overhead projector. Each guest prayed silently prayers for our family. A large offering was given afterwards and our baby’s life was given value to each person."
April, mom to Austin

"One other thing that really helped the bonding was that my church gave me a shower. Like a baby shower but instead they called it A shower of Love. It turned out to be about 2 weeks before Alex was born. Many women came; some that I did not even know and brought gifts to pamper me or a little something to remember my daughter with. They presented us with a quilt that my family and friends worked on. Each quilt block was from someone special in our lives expressing their love for us and a blessing on Alexandra. It is so beautiful. It now hangs in our bedroom."
Kay, mom to Alexandra

 

5. After birth

The German word for delivery literally means "de-bonding" (Entbindung). This is true for the physical bond a mother and her baby share during the pregnancy, but for the bonding we are talking about here, the birth is rather an accomplishment. Finally, we can really see the baby, take it in our arms. Through the birth, we take just a few more steps that draw us closer to the child, give him a face and make it unforgettable.

 

5.1. To experience birth

"I was so glad that I was able to give birth to my daughter naturally. For one, my body and my soul needed the pain to let her go. But the experience of the birth was also so deep compared to my other children. It was like that euphoria that comes with every birth was just increased tenfold. Just as the pain of knowing that she would soon die was as deep as an ocean, the joy of being able to welcome her was higher than the highest mountain. At that moment, it didn’t even matter if she was born alive or not. What we had experienced together was most powerful and beautiful."
Monika, mom to Anouk

 

5.2. To meet

"Then we put him skin to skin with me. I loved that moment so much. The nurse said he was struggling to breathe, but to me that was how he adapted in this big world, so he sounded like a purring kitten and it sounded so cute. Everyone in the room carried him until the end and his dad carried him last."
Vi, mom to Jaden

"The midwife asked me if I wanted to touch Emil (he died before birth), but at first, I just wanted to look at him. She left us alone with our son. I began to look at Emil for a moment before I dared to take him in my arms. It was strange, I wasn’t even sad – only proud and filled with joy to finally be able to look at him. I had been so curious to know what he would look like."
Petra, mom to Emil

"After a few hours we were moved to another room in the hospital. I only mention this as it was a sweet highlight for me to be able to bring Emily to the new room. For a brief time I had Emily away from the medical environment of the birthing room and we were able to have a father-daughter stroll. I walked slow. This was one of my moments and I took it in as a priceless treasure."
Ryan, father to Emily Jean

 

5.3. Life with the child

"We all held and talked to her. Daniel (her brother) spent time showing her our "book" that we have been working on with messages, art and pressed flowers. He taught her all of the flower names that he remembered and that his favourites are zinnias. We read her a couple of books, and Daniel shared his baby toys with her."
Katharine, mom to Lily

"The night he was born and died, we bonded with him by holding him, singing to him (even after he passed away), praying with him, putting on a special outfit, bathing him (after he was dead), and sleeping with him overnight even though he was gone. We took several hours of video in the short time that he was alive, and we are so thankful to have that video to look back on. It helps us remember how deeply bonded we were with Jaron."
Liz, mom to Jaron

 

5.4 Create keepsakes

"Before our wonderful nurse left for the day, she helped us do Lily’s "arts and crafts" projects. Daniel enjoyed this part a lot. We got a shell filled with plaster of paris and then imprinted with her toes."
Katharine, mom to Lily

 

5.5 Ritual

"While my husband was holding Timothy he performed our son’s baptism with the tears that were streaming down his face. When he put Timothy in my arms again, I also baptized him in the same fashion because I did not realize my husband had already done so."
Donna, mom to Timothy

 

5.6 To let go

"On the second to the last time that I had the nurse check her heartbeat she confirmed what I already knew in my heart and that was her heart was slowing and she was fading fast. The last few minutes of her life was spent on Elizabeth's chest with the two of us holding her. It was very special."
Aaron, father to Zion-Grace

"I yelled for Dan to come because I thought she was really passing this time. He came and kneeled next to us. He held Sarah’s little hand and kissed her forehead. As he was holding her hand, he began to tell her: "It’s ok; you can go to be with the Lord now. Be free. Daddy gives you his permission to go." Sarah looked at him as if she knew and heard him. Then she looked at me and I said: "yes baby girl, you may go now." She took one last look at her daddy and me then took her last breath."
Sandy, mom to Sarah

 

5.7 To say goodbye

"We planned Kyle's funeral for July 8, 2006. It is a very difficult thing to plan a funeral for your child, but the service was absolutely beautiful. The priest made a comment about how long Kyle had lived. He said that it didn't matter if Kyle lived 23 minutes, days, months, or years because 23 minutes is a lifetime."
Krista, mom to Kyle

"At her funeral the pastor played the recording we had of her heartbeat. My girlfriend told me her mom went home from the funeral and told her other daughter and her friends about hearing that heartbeat and realizing that Alexandra really was alive!!!"
Kay, mom to Alexandra

 

6. How bonding can be influenced

"Three weeks before Phoebe and Bernadette were born, I had yet another of many ultrasounds. When Bernadette began jumping around, the technician commented about how babies are sensitive to the sound waves, which surprised me because one of my obstetricians had informed me early on that most babies with anencephaly are both blind and deaf. Excited by the idea Bernadette could hear, I spent the last few weeks talking and singing to the girls every chance I could. In the evenings, my husband would prop me up on the couch and play his guitar and sing to us."
Kara, mom to Bernadette

"Another thing that impacted me was the words of a genetic counselor. The day we had her diagnosis confirmed, she looked at my husband and I and said, "You are parents to your daughter and you need to choose how you are going to parent her even though your time together may be brief." Those words helped me to not think of myself as such a victim but rather as an adult that had a responsibility to my child."
Kay, mom to Alexandra

"The first ultrasound was a painful reminder. The technician can make all the difference, I have found! Not only did I learn that no miracle had been performed, but the technician said Joyann only had one ear... imagine how upset that made me. Then, at a later ultrasound (with a sweet and caring technician) I was able to see that she did indeed have both ears and that she had hair and chubby cheeks. The technician this time told me to "concentrate on her beauty"."
Jewell, mom to Joyann

 

7. Conclusion

Children with anencephaly are often stamped as "incompatible with life". It is true that they only live a few hours or days after birth. Outsiders may consider that length of minimal importance, a negligible quantity.
My hope is that after reading those few testimonies of affected families, you may see that even though the time with a baby with anencephaly may be short, it can be a very rich time. The life of that child doesn’t begin only at birth; it begins at conception. For a child with anencephaly, pregnancy may be lifetime. A life worth being lived.

"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 2007-2007, but what was most important was his dash."
April, mom to Austin

 

8. References

Lothrop, Hannah: Gute Hoffnung, jähes Ende. Kösel Verlag, München 2000

Manrique, B., Contasti, M., Alvarado, M. A., Zypman, Monica, Palma, N., Ierrobino, M. T., Ramirez, I., & Carini, D. (1998): A controlled experiment in prenatal enrichment with 684 families in Caracas, Venezuela: Results to age six. Journal of Prenatal and Perinatal Psychology and Health, 12 (3 and 4), 209-234.

Van de Carr, K., Van de Carr, F. R. & Lehrer, M. (1988): Effects of a prenatal intervention program. In: P. Fedor-Freybergh & M. L. V. Vogel (Eds.), Prenatal & perinatal psychology & medicine: A comprehensive survey of research and practice (pp. 489-495). Lancaster, England: Parthenon Publishing Group.

 

Last updated June 23, 2015