Moms and dads who have chosen to carry their pregnancy to its natural end may want to develop a birth plan. Birth plans for pregnancies with a life-limiting diagnosis tend to be more involved than a standard birth plan. Sharing your birth plan with health care professionals and your family may be helpful in making your desires become a reality. Many parents find it helpful to meet health care professionals before going into labor and explaining their situation, whether in person or through a letter.
Taking time to reflect on what is important to you and your partner is an important part in your journey. Communicating your desires with your health care team is also an important step in making your desires a reality. Below are some options you may want to consider as you develop a birth plan:
Life sustaining measures
Depending on the type and severity of your baby’s life-limiting condition, life-sustaining measures may or may not be in your baby’s best interest. Talking with your health care team about whether or not to have life-sustaining measures (such as CPR, a beathing tube, etc.) is an important step whether or not you develop a complete and detailed birth plan.
Designating an Advocate
Designating someone you trust to be your advocate may be helpful to you and your partner. If you choose to have and advocate, be sure you clearly communicate, in written form, what you wish to occur. I was my advocate for my sister and her husband. They gave me the birth plan they developed and asked me to see it through. That way they were able to focus on each other and their daughter and create special memories without worrying about everything else that was going on.
Photographs
Photographs can be a very special and powerful way to keep the memory of your baby alive. Having someone other than the “non-laboring” partner taking photos, if you are comfortable with that, enables your partner to focus on you and your baby. Now I Lay Me Down To Sleep is an organization of photographers who provide their services to parents experiencing perinatal loss. You may prefer a friend or family member to take photos for you.
Deciding if there are specific photos you hope to have before you go into labor is often helpful. Writing a list of the photos you would like is also helpful to the photographer and helps you remember what you want. Which family members, if any, do you want photographed with your baby? Do you want a photo of siblings together? Are there meaningful friends, mentors, or spiritual leaders you would like in the pictures?
There is not a right or wrong answer regarding photographs, who takes them, and when. What matters is what you and your partner decide. Take some time to think about what’s important to you and write it down. Be sure to communicate your desires to your friends, family, and health care team.
Mementos
Many parents choose to collect mementos from their baby’s birth. Items used throughout the birth, such as the measuring tape, hospital blanket, or hospital hat. Keeping hair and nail clippings, hand, lip, and foot prints are also important to some people. Taking time to think about what you want and reading about what others have done may be helpful in developing your birth plan.
Visitors
Deciding and communicating exactly who you want to be present for the birth may save you a huge headache later on. For example, do you want to have friends and family come to the hospital or home when labor begins? Do you want anyone other than your partner in the room with you? Do you want anyone other than you or your partner to meet and/or hold your baby? Do you want your baby’s siblings to hold him or her? Are there important friends, mentors, of spiritual members you would like to be present? Those are important people to be notified when labor begins.
How specific do you want to instructions to be? Some families have detailed exactly who, when, and for how long they want each individual visitor. For example, one woman with a very large family had a list of which people got a call to come meet her son if he was born alive, if he lived for one hour, for two hours, etc.
Having a written list of who you would like to be present and designating someone to communicate with everyone takes the pressure off of you and your partner.
Rituals & Ceremonies
Rituals and ceremonies are important aspects of every culture. They are powerful in making memories and in beginning healing. Some rituals are deeply personal, others may be cultural or religious. For example, some parents want their child to be baptized. Taking time to reflect on what rituals or ceremonies are important to you and your partner may be very meaningful. Whether or not you choose to carry out rituals or ceremonies is a deeply personal decision. There are no right or wrong answers, or right or wrong actions. Be sure to write down and communicate your desires with your friends, family, and health care team.
Bathing Your Baby
Many parents expressed their regret at not bathing their baby after birth. The first bath is often and important and meaningful ritual for parents. Thinking about what is important to you and your partner before the birth may be helpful in not missing out on things you may wish you had done.
Dressing Your Baby
Whether or not your baby is born alive, you will have the opportunity to dress him or her. Picking out the little outfit he or she will wear for photographs can be a meaningful activity. Thinking about what you want in the outfit is also important. Is there a traditional outfit handed down in your family? Is there a meaningful outfit, such as one worn by yourself, your partner, your parents, or your other children? Do you want your baby to wear a hat? Parents who have a baby with anencephaly commonly choose to have their baby wear a hat for photos and for meeting family.
One thing to remember is that while funeral homes do everything in their power to return all belongings, mistakes can happen. You may want to have a separate outfit for your baby to wear to the funeral home.
Cutting the Cord
Traditionally, partners cut the cord when their child is born. Sadly, in cases of life-limiting diagnoses, such traditions may be overlooked. Reflecting on what is important to you and your partner beforehand will be helpful in taking part in important rituals or traditions.
Seeing Your Baby
Depending on your baby’s diagnosis, you may find yourself wondering whether or not you want to see your baby. Fearing how your baby will look is a very common fear for parents, especially if your baby may have deformities. Nearly every parent in my original study struggled with knowing if they could “handle” seeing their baby’s head. Once their baby was born, both moms and dads marveled at how “perfect” and “beautiful” their baby was. My sister’s first words after her daughter was born were, “oh, she’s so beautiful!”
You may decide you want someone to put a hat or blanket on your baby before you see them. You may want skin-to-skin and kangaroo care the moment your baby is born. Whatever you initially choose, you have the freedom to change your mind. Whatever you decide, decide according to what you need. This is a very special, intimate, and personal time for you, your partner, and your baby. Reflecting on what you would like and communicating your desires will help your preference become a reality.
Holding Your Baby
Sometimes parents and/or health care professionals may not know whether it is beneficial or harmful to hold your baby after birth, especially if your baby did not survive the birthing process. Whether or not you and your partner choose to hold your baby is up to you. Whether or not you want friends and family to hold your baby is up to you. Being mindful of others in this regard is important. While it may be important to you that everyone hold your baby, remember that you are not the only one grieving. Being sensitive towards others is also important. If siblings, grandparents, friends or other family members do or do not wish to hold your baby, respecting their decision is important. Having conversations with people before the birth may help work out such details.
If you are wondering if you want to hold your baby, you are not alone. Wondering if you want to hold your baby does not make you a bad person or a bad parent. There are no right or wrong answers in this situation. You also have the opportunity to change your mind. Take some time and think about what you need and want. Many parents do find it very helpful to hold their child. When my niece was born, I wasn’t sure if I wanted to hold her. In the end I did end up holding her, and found myself not wanting to ever let go. It was very meaningful to me to have the chance to hold her, and I am so grateful I did.
Culture
The above suggestions are by no means exhaustive. They are also very Western as I am not familiar with other cultural traditions, rituals, and practices surrounding birth. Take some time to think about what is meaningful to you and your partner. What do you want to happen during and following the birth? Who do you want to be there? Are there religious, spiritual, or cultural traditions you wish to take place? Be sure to share this with the personnel where your child is born.