Coping with Anencephaly in a Twin pregnancy

Anencephaly is not only a diagnosis. It is a journey through one of the most beautiful, painful experiences a parent could ever imagine. Experiencing anencephaly in a twin pregnancy has its own unique set of challenges and blessings. Finding a balance between the blessings and challenges can be very difficult.

If you're reading about anencephaly in a twin pregnancy, chances are that you have a very painful reason for doing so. I'm so sorry. It breaks my heart to know there are others who will have a need to research this topic. Because of that, I want to share some thoughts on coping with this experience. Sometimes, simply knowing that the emotions you are experiencing are relatively normal can do wonders in giving some measure of comfort.

We received the tentative diagnosis of our daughter, Carys, at about 16 weeks gestation. It was confirmed the following week. We were absolutely devastated. Expecting the loss of a child we'd not even had the chance to know would have been horrifying under any circumstance, but combined with the emotional roller coaster of a twin pregnancy, it was even more overwhelming. There are so many factors woven into the experience and we spent the whole pregnancy trying to sort through and make some sense of them. I'm not entirely sure we were ever completely successful.

In some ways, it is somewhat easier to cope with anencephaly in a twin pregnancy... or so it would seem, anyway. After all, with one healthy twin, there will most likely be a baby in the nursery after the pregnancy is over. While this much is true, having a twin to a baby with anencephaly may soften the blow, but it doesn't stop the pain; contrary to what some seem believe.

Understanding the depth of a fatal diagnosis in pregnancy is a difficult concept to process, especially for someone who has not been in a position that requires it. While we wouldn't wish the pain of the experience on anyone, this lack of understanding can prompt some very hurtful (though well-intentioned) comments. Whether or not you choose to tell people you meet about your child's diagnosis before birth, you will still hear comments that sting. "Twins?? Oh, you're going to have your hands full!" (Yeah... I was looking forward to that.) "A boy and a girl? Wow, well you'll be all set and won't need to have any more." (If you only knew... ) If you do tell people who ask about your growing belly you may hear comments such as, "Oh... well at least you'll still have one." (As if that makes it not hurt?) "Maybe the doctor is wrong." (Oh, how I wish... but I've seen it on the ultrasound myself.) One that I have heard of but thankfully didn't hear myself may top the cake: "Oh, at least you know now before you have time to get too attached." (This is my child, not a puppy!)

These are only a few of the many, many heart-wrenching comments people tend to make. Most of the time, they mean well, but even the best of intentions aren't always helpful. Keep in mind, though, it's hard for someone to respond appropriately when they've just been caught off guard with news of an infant's fatal diagnosis before birth. It's a difficult, heartbreaking concept. We usually think of "old" people dying. Not babies. Remembering this may help to ease the hurt that results from some of the comments others may make.

Physically, a twin pregnancy has additional risks under any circumstance. The increased risks for pre-term labor and pre-eclampsia, the possibility of twin-to-twin transfusion, and other potential complications automatically put an expectant mother of multiples into the high-risk classification. From my experience, additional risks in a twin pregnancy with anencephaly are not much different. One of the biggest concerns to my knowledge is probably the possibility of polyhydramnios, or an excess of amniotic fluid. This also increases the risk of pre-term labor, and would even in a singleton pregnancy.

Another concern I had after Carys' diagnosis about the possibility that she may not survive until birth, and would therefore present additional challenges to her brother, Paxton. However, our high-risk specialist told us that most likely, she would continue to develop normally at least into the third trimester. Something I found helpful to remember is that, while the loss of one twin mid pregnancy could also happen in any "normal" pregnancy, the medical field has also come a long way in procedures and available resources to handle such a situation with a positive outcome for the other twin.

With that said, I can't ignore the emotional implications of such concerns. As I worried about our son in the event that something happened to his sister before they were born, I felt guilty for seemingly not giving her as much attention (though I know it wasn't true). I found it quite the challenge early on to be able to effectively balance my maternal instincts to protect each child and not show favoritism to either one. I found myself not wanting to give Carys extra attention because it didn't seem fair to Paxton, and not wanting to waste any moment with her, knowing she wouldn't be with me long.

From someone who wasn't in my shoes, this may have seemed silly. How could I give one more attention to the other, when they were both still in-utero? In a way, it seemed silly to me; but I knew my own thoughts. The bond we form with our babies begins long before delivery.

That same guilt carried over into other areas as well. Throughout the pregnancy, I couldn't make myself talk about plans for Paxton as he grew up. It hurt to talk about what I wanted to teach him and show him, or where I wanted to take him. It hurt because tucked in my womb with him was his sister, and I'd never have a chance to do those things with her. It was painful to rearrange nursery plans and choose only one crib. It was very difficult to both allow and register for a baby shower for him alone (and I had a bit of a break-down in the baby aisles of Wal-Mart). I kept feeling like I was being a horrible mother to her; like I was ignoring her in some way.

I didn't purchase "fun" things for Paxton while I was pregnant. Toward the end of the pregnancy, I used the gift cards I received at the baby shower to get some of the necessities we still needed, but I didn't feel like shopping for things "just because." I couldn't buy for both of them, so I didn't want to buy for either just yet.

Eventually, I had to accept the fact that it was OK to have different hopes and dreams for each child. It was ok to make plans for Paxton. I found great comfort in my personal beliefs about the attributes of who God is. I believe God created both of my babies intentionally and with great purpose, and that He had a plan for my daughter, just as much as for my son. I found comfort in knowing that Carys has a place in Heaven and didn't NEED the things I would have purchased for her here on earth. I remember one day I saw baby girl clothes in a shop and I suddenly felt such a sweet peace I didn't normally feel in such a moment. It seemed so clear to me, as I looked at those cute little outfits with their wrinkles and earthly imperfections, that Carys had much better things waiting for her. That was very comforting to me.

Ultimately, it's just important to remember that it's OK to do things your own way. There is no how-to guide for the proper way of handling the knowledge that your child is not going to survive after birth. The "What to expect" type books don't really tell you how to anticipate every emotion or complication. It's OK to give yourself permission to grieve in your own way. If you find comfort in purchasing baby things for one or both babies, that's ok. If you find comfort in waiting until after the babies come, that's ok too. It's ok to get excited when thinking about the future with one baby while grieving the upcoming loss of the other. Joy, Peace, Pain, and Grief CAN all co-exist in some strange way. I personally believe that God will give us exactly what we need when we need it, if we'll rely on Him – and there has never been a time in my life that I have felt the need to rely on Him more.

To get to the point, we know there is no cure for anencephaly. We can't change the diagnosis. What we can do, however, is choose how to respond to it. Even so, that thought may not be very comforting in the first days after an anencephaly diagnosis. I know it wasn't initially comforting for me; I only wanted to hear that my sweet baby was misdiagnosed and would indeed survive and thrive after birth. Of course, I also knew the possibility of a misdiagnosis was not likely.

If you are facing your child's diagnosis of anencephaly, you do have a choice in how you are going to approach it. You can fight it, kicking and screaming, but it won't make it go away. If the diagnosis is there, as helpless as it feels, you have to face it... and despite how it may feel at times, you can face it. Find support where you can find it. I would strongly encourage you to join an anencephaly support group (I found one at yahoo called "Anencephaly Blessings From Above" and some on facebook as well); it's helpful to talk to others who have been in your position. Focus on your spiritual health, too. Spiritual health is a major part of wellness that is often overlooked, but very important in this journey.

There's no "wrong" way of coping, as long as you're dealing with your grief and not just sweeping it under the rug. If you don't already have a regular mental health professional, now would be a good time to find one- especially if you are feeling consumed by your grief and find it difficult to function from day to day. Mental health professionals are trained to help you process what you are facing and sort through your own thoughts and emotions to better cope with your experience. They are there for your support. Taking care of your mental and spiritual health is just as important as taking care of your physical health. I know it may be easy to want to just shut down and not care for any of the three, but you can get through this. Even when it feels like you can't- you can.

M.Ed., L.P.C.C., N.C.C.

Stories of twins

Carys and Paxton fraternal twins
Anna and Logan fraternal twins
Anna and Tess
Christopher and Harry identical twins, monochorionic, diamniotic
David and Jonathan
Faith and Sarah fraternal twins
Jason and Carson identical twins, monochorionic, monoamniotic
Kaden and Kaysen identical twins, shared a placenta
Madeline Grace and Molly Rose fraternal twins
Matthew and Emily fraternal twins
Clara and Caleb fraternal twins
Emily and Hayden fraternal twins
Matthew and Noah identical twins, monochorionic, monoamniotic, both had anencephaly
Oran and Jude identical twins, monochorionic, diamniotic, shared the placenta
Elizabeth and Lauren identical twins, monochorionic, monoamniotic

Please don't hurt me, I'm already hurting enough Chrissy's story about her fraternal twins Cayden and Carter

Families & friends – what to say or do that might help
The Butterfly Project has written a special page with do's and dont's.

Books

* Maranomi: The story of Paxton Cole and Carys Rainn
by Keri and Aaron Kitchen
The story of Paxton Cole and Carys Rainn is a true story about exploring faith in God and finding peace and joy in the midst of pain and sorrow after one twin is diagnosed with anencephaly, a fatal birth defect at 16 weeks gestation.

* The Story of My Purple Butterfly
– by Kate Polley
The book, a story of hope and comfort, has been written for surviving twins, to help them to talk about and remember their twin. The purple butterfly represents the twin and is a reminder that although no longer here on earth, their twin is always around them. It is a book of love and remembrance and helps families to talk and share their feelings around loss and grief, providing a happy memory to support their loss.

* When a twin or triplet dies
A booklet for bereaved parents and twins, edited by the "Multiple births foundation".

Links

* Center for Loss in Multiple Birth (CLIMB), Inc.
By and for parents who have experienced the death of one or more children during a twin, triplet or higher multiple pregnancy. Quarterly newsletters, parent contact list, bibliography of information, ...

* The Skye High Foundation
The Skye High Foundation was set up to support families during and after the loss of a twin, triplet or multiples. They created the purple butterfly cot card, which is to be placed in an incubator or cot in memory of their sibling. The cot card is used in conjunction with a poster that is placed around maternity and neonatal units, which explains the meaning of the purple butterfly. The cot card allows families the opportunity to make others around them aware of the journey they are going through. In addition they have created packs which can be sent to either families or hospitals.

* Neonatal Research - The Butterfly Project
Most women who have a multiple pregnancy (twins, triplets or more) do not have complications, but sadly, every day in the UK at least one baby from a multiple pregnancy dies. We wanted to better understand what it felt like to be a parent who has had to face such a difficult challenge. We spoke to parents who had lost at least one baby, and had a least one surviving baby from a multiple pregnancy, and we spoke to midwives, doctors and nurses to hear about their experiences.

* Twinless Twins
The Twinless Twins Support Group International™ (TTSGI) provides a safe and compassionate community for twinless twins to experience healing and understanding. TTSGI also provides support for twins and other multiples who have lost their twin due to death at any age. A special section about early twin loss provides articles and information for the whole family.

* Wombtwin Womb Twin is a voluntary organisation dedicated to provide information and support to womb twin survivors all over the world. Womb twin survivors are the sole survivors of a twin or multiple pregnancy.

* Bereavement from a twin pregnancy
Guidelines for health professionals, edited by Neonatal Research - The Butterfly Project.

Last updated January 14, 2023