Sharing What I Learned

Losing our precious baby Thérèse taught me many things, introduced me to many resources, and showed me how many families are affected by miscarriage, stillbirth, and infant death.  Since sharing our story, nearly fifty women and their family members reached out to me to share their stories or ask for advice on how to navigate through this time that nobody seems to talk about.  

Rather than keep the advice and lessons learned to myself or within private messages, I want to share helpful lessons and resources with everyone interested in learning more.  Whether a person needs the advice now or faces the death of a baby down the road, hopefully this shared insight will help them to face that time with some gained perspective and the knowledge that there is a community of support ready and willing to help. 

Here is what Philip and I learned:

Hold The Baby and Bring Items for Them to Hold
If parents receive a terminal prenatal diagnosis for their baby, think he or she may die shortly after birth, or that the baby may not even survive the birthing process, consider a c-section.  A c-section may offer them the opportunity to hold their living baby. 

If other family members are present or will be shortly after death, invite them to hold the baby.  This will be their only chance to see and behold your precious baby, so offer them that option if you are comfortable with it or they request it.  I was able to hold my niece shortly after she died, and I am so grateful that my sister and brother-in-law gave me that tremendous blessing.  It was the only chance I had to hold her and see her with my own eyes as my precious, irrepeatable niece. 

Get the Right Doctor, Be Your Family's Best Advocate, and Trust Your Gut
If you feel that your doctor is not sensitive to your family's needs or wishes, switch doctors.  Some physicians may advocate termination when you desperately wish to move forward with a pregnancy despite a terminal diagnosis.  Find a doctor who will help your family to make decisions that uphold your family's beliefs.  

I highly recommend finding a pro-life doctor from OneMoreSoul.com.  This is how we found my amazing NFP-only OBGYN.  Without his pro-life convictions and support, I think losing our baby would have been a different experience.  Despite what the science was telling him, he trusted my gut feeling that something was wrong and told me to come on in for an ultrasound.  The ultrasound confirmed that Thérèse had died.  He always referred to Thérèse as our baby instead of "the fetus" or "the products of conception," affirmed that her death was a real loss, and encouraged us to take all the time we needed to grieve. 

Make Memories Just Like It Were a "Regular" Pregnancy or Delivery
During the pregnancy, do the things parents do during "regular" pregnancies to make memories.  Keep everything.  I asked to keep the ultrasound pictures of Thérèse because they were the only chance I had to see her.  Take belly pictures, write in a journal, or write letters to the baby.  Writing was very therapeutic for me after we found out we were miscarrying, and several women shared that putting their thoughts into writing during a pregnancy with a terminal diagnosis helped them as well.  Whether it's a personal journal, a private or public blog, or some other writing outlet, writing is a helpful way to put thoughts into words or remember the details as they happen when you don't have the energy to talk to another person.  The other reason I loved writing about things as I felt them was that I wanted to capture the details.  I wanted them on paper so that when I was ready to relive some moment or face something emotionally, the memory was all laid out for me to throw myself into.  Rereading about the day we found out Thérèse had died or the day I had my emergency D&C helps with the healing process on the days that I am able to relive the experience.  

Bring special items like a stuffed animal or a blanket to wrap the baby in at the hospital.  These items that your baby touched are treasures.  Some hospitals provide services to take clay imprints of the baby's footprints.  Consider creating a playlist of music to play during labor, delivery, and after the baby is born.  The music that you listened to as you met and held your baby might bring you comfort in the future.  

There is a fantastic resource called Now I Lay Me Down to Sleep Photography.  NILMDTS specializes in the photography of parents with their babies 25 weeks or older for a private session at the hospital immediately after their baby's death.  Over 5000 photographers are available throughout the country to offer this invaluable service to grieving parents searching for a way to capture their baby's memory.   You can find a photographer through the NILMDTS website here. 

Name the Baby
Choose a name for your baby.  This way, your precious, irrepeatable little baby will be more in conversation than "the baby we lost."  Other family members will have a name to refer to them by, and you have a name to call on in heaven when you ask for their intercession in prayer. 

You may not be far enough along in the pregnancy to know the sex of the baby, and that's okay.  You can either pick a name based on the inkling you had or choose a name that works for both genders.  

Baptize the Baby
If the baby survives delivery and is in danger of death, baptize the baby.  If possible, make arrangements ahead of time and ask your priest to be there in the delivery room.  If not, remember that anyone, including parents, can baptize case of danger of death.  All that is necessary is some water to pour over the baby's head as you say the words, "I baptize you in the name of the Father, and of the Son, and of the Holy Spirit."  Pour the water one time for each member of the Blessed Trinity, and add the baby's name before blessing if you chose a name.  For example, "Innocent, I baptize you in the name of (pour water) the Father, and of (pour water) the Son, and (pour water) of the Holy Spirit."  For further information, consult the Code of Canon Law and the Catechism of the Catholic Church.  Your parish priest will help you navigate these questions as well.      

Formally Commemorate Your Baby's Life and Death
I recommend having a formal memorial service of some kind.  Gather family and friends (whoever you'd like to be present) to celebrate a memorial Mass, a Rosary, or some other formal way to recognize that you were blessed with a precious baby that died and that you want to remember and pray for them together.   

Honor other family members by asking them to participate in your ceremony.  We asked our niece and nephews to each lead a decade of the Glorious Mysteries of the Rosary for Thérèse.

Many cemeteries and funeral homes work with families at little to no cost to provide them with caskets or burial plots for babies.  Many cemeteries have special areas set aside for babies that die through miscarriage, stillbirth, or as infants.  Our baby Thérèse died at 12 weeks gestation, so she will be buried in a special crypt with other miscarried babies in a Catholic cemetery.  We are comforted knowing that there will be a physical place that we can go to with a marker to visit our baby.  

If the baby has older siblings, some parents ask the children to bring a balloon to the burial to send up to heaven for the baby to "catch."  Having a physical place to visit on the anniversary of the baby's death, original due date, or other important family anniversaries can be very healing.  

Celebrate the Anniversaries
Find a ritual that works for your family to memorialize your baby.  Perhaps you'll visit your baby's gravesite, donate a blanket or monetary gift to the hospital NICU, donate to your parish school, or find another way to share the love of your child with your larger community.  My sister and brother-in-law decided they would commemorate each passing year by donating to an area women's religious order summer camp for vocations in honor of their daughter.  

Advocate for the Proper Handling of Your Baby's Remains
Unfortunately, not all hospitals or healthcare providers are as sensitive as they should be with the handling of your baby's remains.  In our case, I had to go to an area non-Catholic hospital emergency room for an emergency D&C after severe blood loss.  

I was asked to fill out a form to determine what we wanted to happen with Thérèse's remains as I was being prepped for an emergency D&C.  There were three options available on the form.  Option one was to allow the hospital to treat the remains according to hospital policy.  This basically amounted to treating our baby as medical waste.  The other options were to release Thérèse's remains to a funeral home or to say that we were unsure at the time.  

Philip had accepted a job after residency in another city, so we knew we wanted Thérèse's remains buried there.  We asked that Thérèse's remains be released to us so that we could deliver them to a Catholic hospital in that city to make arrangements for burial in that city's Catholic cemetery.  Unfortunately, it was against this hospital's policy to release the "products of conception" directly to parents.  They usually worked through funeral homes.  In our case, since we would have needed Thérèse's remains transferred to another city, it would have cost a pretty penny to have a funeral home deliver her remains to the hospital in the other city.  Had we miscarried at home, we would have avoided the legal hoops and could have delivered our baby's remains to the hospital for burial without incident.  

It took a very special pathologist from the hospital to advocate for us with the hospital's administration and legal team to get Thérèse's remains released to us.  Although he is our baby's father, Philip could not pick up Thérèse's remains since they were in my name as the hospital patient.  So, I packed up the kids, and we headed to the hospital to pick up Thérèse's remains.  The hospital had to draw up a release for me to sign, saying that I would deliver Thérèse's remains to the Catholic hospital for burial.  Also, I had to sign that I was aware that "coming into contact with the products of conception" could cause serious infection or even death.  The pathologist shook my hand and said that he was so sorry we had to go through all of the legal hoops.  He said he went to bed the night before feeling terrible about how things happened but that he was glad he could help a family bury their baby as they wished.  I think of that sweet pathologist often and am so grateful for how hard he worked to help us.  

If you feel that the way your doctor, a nurse, or other healthcare professional handled your situation was not helpful, let them know.  I am writing a respectful letter to the hospital where I had the D&C.  When I was bleeding uncontrollably, the emergency doctor started to remove Thérèse without telling me what he was doing.  Perhaps he was just focused on stopping the bleeding, but I had to ask Philip and the nurses to tell me what was happening.  I watched as he filled container after container, and I kept asking if he had found our baby.  It was a bizarre and helpless feeling.  We were also disappointed in the way the hospital would not release Thérèse's remains to us without a fight.  If I don't make the hospital aware of our story or our feelings, other families may experience the same kind of fear or frustration.  I hope my writing a letter to the hospital will help others.   

Although we had some negative experiences with some healthcare professionals, there are many well-trained and sensitive doctors or nurses trained to help families through and in preparation for the death of a baby.  If you receive a terminal diagnosis during pregnancy or your baby dies while in the hospital, find out if there are trained grief support professionals available to help you.  There are often registered nurses with additional training in bereavement services.  These special people can help facilitate the creation of mementos, referrals for community support, registration for grief support groups, or help your family to make various unexpected decisions.  They will help families to avoid unnecessary heartache by doing things (with your permission) such as: marking your door with a special sign to alert others that your baby died (this will prevent well-meaning nurses or others from asking hurtful questions about breastfeeding, newborn photos, etc.), or they may help you to be transferred away from the maternity wing if you wish, etc.     

Consider the Gift of Life
Some babies are eligible for organ donation.  Although it might be too difficult to consider beforehand or even in the moment, your precious baby can give other families the gift of life.  The donor recipients will be living memorials to your baby.  If you have ethical concerns about this practice, contact the National Catholic Bioethics Center in Philadelphia for a consultation.

Read or Listen When You Don't Feel Like Talking
There are some fantastic books and other resources available for parents or other family members searching for support when they don't feel like talking.  Reading was a great comfort to me during the quiet of night, when Philip had a long shift, or during the kids' naptime.  I read a few books that I highly recommend:

1. Naming the Child: Hope-filled Reflections on Miscarriage, Stillbirth, and Infant Death by Jenny Schroedel.
2. Empty Cradle, Broken Heart:  Surviving the Death of Your Baby by Deborah Davis.   I need to point out that this book shares stories of post-abortive women as well as families that lost babies through miscarriage, stillbirth, or infant death.  Feel free to skip through the stories that are not as helpful or pertinent to your situation.  Reading stories about women who chose to end their pregnancies when I so desperately wanted mine was difficult, so I chose to skip those.  Nonetheless, those women need to find healing, and this would be a tremendous book for post-abortive women trying to find support.
3. Catholic Answers Live podcast, After Miscarriage, with Karen Edmisten and Donna Murphy.  Donna Murphy has an apostolate called Heaven's Gain dedicated to casket making for babies.  Karen Edmisten wrote a book called After Miscarriage: A Catholic Woman's Companion to Healing and Hope that I read and found very uplifting.  
4. The Problem of Pain and A Grief Observed by C.S. Lewis.  Lewis tried to address the problem of evil as a Christian in The Problem of Pain.  It wasn't until the death of his wife that he felt he personally experienced profound pain and wrote about enduring it as a Christian in A Grief Observed.   

I know there are other wonderful books out there, but these were very helpful for me.  Each of the books has a rich bibliography full of additional resources. 

Forgive Others and Give Yourself a Break
When others say or do the wrong thing, stay away, or don't know what to do, forgive them.  When someone says the wrong thing, you can tell them, but remember that their risking saying the wrong thing is probably coming from a place of love.

When you're not ready to talk, you're struggling through your grief, or you need to ask for help to get through the day, forgive yourself.  My wonderful friends and family offered to take the kids so that I had time to be with my thoughts or cry.  This was a tremendous gift.  One of my favorite things to do was sit in silence in the adoration chapel, let the tears flow when they came, and listen to our Lord.  

Don't be afraid to ask for help, and don't be afraid to make the request specific.  As my friend told me, "People love you, Catherine.  They want to help you.  They need it, too.  Let them."      

If the grief becomes overwhelming, get the help you need to work through the healing process. 
   
Make Sure "Dad" Gets Support
Dads often get forgotten while Mom and Baby get all of the attention.  Make sure "Dad" is able to work through his feelings and get the support that he needs.  Philip and I made it our routine to check in with each other before bed each night.  A month later, we still check in.  "How are you doing today?"  

Since men tend to handle things differently, and each man will handle things differently than another, help your husband find a way to grieve and share in his own way.  Some men might enjoy talking with other dads or just having a little silence.  Since many men don't have a chance to decompress on the way home from work or have friends to talk to about their baby's death, give them an opportunity to have some silence before they get home.  My friends suggested that Philip pop into our parish adoration chapel for 10 minutes on his way home.  Also, remember that it is okay for your husband to grieve differently than you.

Don't Try to Compare Apples to Apples
No one may ever perfectly understand your story, and that's okay.  Nonetheless, it's human nature to compare stories.  When we hear about another family's tragic loss, sometimes we try to comfort them by saying something like, "Wow.  You had it so much worse than I did.  I only miscarried, and you had a full-term baby."  

Resist that temptation.  It's okay that our experiences are different because, well, they simply are.  There's not better or worse or easier or harder.  They are just ours.  

When my sister tried explaining this to me, she said a friend gave her some great advice.  "If we had all of our problems thrown into a pile, we'd still pick our exact same problem out of the pile again.  After awhile, you own it, and it becomes a part of you.  You wouldn't trade your problem for another person's problem because it's yours."   

So, whether you lost a baby days after a positive pregnancy test, in the delivery room, or just before their first birthday, you still lost your irrepeatable baby that you love.  Your baby deserves to be remembered, grieved, and prayed for.  Don't let your baby's age diminish your love affair or the depth of your grief.

What Did I Forget?
This is only a compilation of the things I learned, read, and experienced as we navigated losing Thérèse.  Everything I wrote won't be helpful for each person, and I'm only one person, so I undoubtedly didn't write everything on the topic.  Hopefully at least one thing I wrote will help you to help yourself or a loved one through the death of a beloved baby.  If you are a medical professional, hopefully this added insight will help you to be a better advocate for families and their babies.  If you have something to add, please share it below.  No family should have to experience the death of a baby and feel helpless as they navigate the process.  It is my prayer that sharing my story and the lessons we learned through the process prevents other families from experiencing further heartache and find peace as they grieve their baby.     

Additions Since Original Post:
A friend passed along information about the Missing Angels Bill.  If families have a baby that is stillborn, the Missing Angels Bill helps them to create a birth certificate for that baby.  The birth certificate is called a Certificate of Birth Resulting in Stillbirth.  Here is an article with more information. 

Another tremendous resource for families is the MISS Foundation.  According to their website, MISS is "an international 501(c)3, volunteer based organization providing C.A.R.E. [counseling, advocacy, research, and education] services to families experiencing the death of a child."  For more information or to find local MISS chapters, check out their website here.