by Dr. Osarumen Nicole Doghor reproductive psychiatrist at Texas Children’s Hospital

In my work as a reproductive psychiatrist at Texas Children’s Hospital, I have noticed families struggle with emotion regulation, interpersonal relationships and self-identity while experiencing reproductive issues.

Specifically, I would say the top five experiences that families exhibit are grief, anxiety and depression, relational strain, insecurity and shame and, finally, hopefulness.

It can be difficult for others to understand the immense sense of sadness and loss for women experiencing infertility. First, there is the primary loss of not having a child, as well as the secondary losses of finances for treatment, strain in relationships and lowered self-esteem. To discuss the primary loss, one needs to understand infertility as “blank mourning”. In essence, this is a term we use to describe the mourning for a wished-for experience; making it difficult to cope as there is no specific person or object to mourn. However, women going through infertility describe the same symptoms of bereavement one would have after experiencing a loss. For instance, many women describe an intense sense of longing when seeing other pregnant women or children, in the same way, someone who has lost a loved one would feel when reminded of their loved one.

Grief is a normal experience that women struggling with reproductive issues may encounter. However, it is important to note that women struggling with reproductive issues may suffer from more severe psychiatric symptoms, including anxiety or depression. Depression can set in when a woman starts engaging in isolation, excessive tearfulness, thoughts of not wanting to live, stops participating in previously enjoyed activities or feels shame and guilt. Some women begin struggling with insomnia, fatigue, or poor focus and concentration as symptoms of either depression or anxiety. Women can become excessively worried and anxious during different phases of infertility treatment as well.

I have also noticed that relationships can be strained during reproductive struggles and at times therapy can be helpful to discuss the grief that both partners are experiencing. Couples therapy provides an avenue for partners to be open about feelings of disappointment and pain in a nonjudgmental environment with coaching on how to communicate this distress to one another. Oftentimes people notice their relationship with friends and family feel different. They become tired of answering questions about their fertility status. They may find it difficult to attend birthday parties of small children and baby showers. This could lead to distancing oneself from certain friends and family members, limiting their social circle. These social challenges may be linked to underlying insecurity and shame. Women experiencing infertility may find it hard to see themselves in the way society defines womanhood. I have heard some women describe feeling “defective.”

Lastly, I have seen tremendous hopefulness. I have found women and couples struggling with reproductive issues to be some of the most determined people, with characteristics of strength and perseverance. I think balancing the hope is very difficult because women, their physicians, and partners tend to focus on the hope of eventually having a child. What I have found remarkable in my experience, are the individuals who can find a balanced view of hope in whatever circumstance they find themselves knowing they will survive and work towards building a meaningful life.

by Angie Lemont Bresnahan, HRH Mom and Volunteer

I gave birth at 28 weeks on February 20th to our son Beren Bazin, weighing 2 lbs. 9 oz., and our daughter Adalyn Elaine, weighing 2 lbs. 11 oz. They were the most beautiful people TJ and I had ever seen. They were the tiny, precious gifts I’d dreamed of for so many years. Adalyn had a few complications at birth but Beren was doing great and as strong and healthy as you can hope for with a premature birth. So you can imagine our shock and heartbreak when we lost our son just five days after he was born. It took a month to learn the cause of his death; an autopsy revealed he had an undetectable infection around his heart. We treasure the few days we had to hold Beren and show him how much we love him, and we think about him and miss him constantly.

I have always been open about my journey to Motherhood. From infertility to grief. I believe that sharing my story can help others. Trying to find the right words to say to grieving parents can feel impossible. They have just lost their baby. No words you can speak will make the pain go away, but the right words can bring comfort. As a mother that has lost a child, I have heard it all. The truth is no one knows what to say to a grieving mother because everyone deals with grief differently. I hope in reading this, it helps you feel more comfortable about what to say to someone that is grieving the loss of a child.

Platitudes. Don’t use them. Even though your words come from the best of intentions. What you think are the right words, can hurt the most.

“I know how you feel. I lost my Grandfather.”

Comparing stories causes more harm than good. Every story is different and grief is different for everyone. Never tell a bereaved parent you know how they feel. The truth is nobody knows how anyone feels. Everyone grieves differently.

“Over it”

We can’t control feelings. No one can. It’s how you feel. Trust me, nobody wants to feel this way. We have become a different person. We will always be a grieving mother. We just get better at not showing our feelings.  Please be patient with us. We have to find a way to exist in a world without our future dreams and plans for our lost child. The sad truth is we will never be “over it”. Those words should never be spoken in this kind of situation. We will never get over losing our child. We will heal, but the scar will always remain.

“At least it happened early and you didn’t know your baby.”

A mother becomes a mother the moment she finds out she is pregnant. She dreams of birthdays, holidays, and watching her baby grow. No matter how far along she is, she is still a mother. We carried our baby in our womb. Now that we can’t carry them in our arms, we carry them in our hearts. When a child dies all those dreams turn into wonder. A life of wonder. We wonder about our baby instead of watching them grow up. What would the baby have enjoyed? What kind of person would my baby have become? Holidays will be difficult. Keep them in mind during these times. Send a card on Mother’s Day, say something comforting on Christmas, the child’s birthday, or the anniversary of the child’s death. Not just the first year but every year. Put a reminder in your phone and let them know you are thinking of them. Random times as well. The mother will think of her child every day of every year. It’s nice to know others are thinking of them and us as well.

“The baby is in a better place.”

To a mother, there is no better place for her baby than in her arms. Period.

“You can always try again for another baby. Be thankful for the children you have. You can always adopt.”

In some cases, these might be true. But no baby will ever replace this baby. Another 50 babies won’t be able to replace the one who has gone. There will always be a hole that will never be filled. We are so blessed to have Adalyn. She is her own person and a part of her is missing as well. They can not be compared as they are two different babies.

“I know it sucks but you have to move on.”

A grieving Mother will never move on. In time, it will become more bearable. It will have less impact on her daily routine. She will never be herself again. She will find a new normal. She will have to learn to live in a world where her baby doesn’t. Just give her time. Let her know she can take as much time as she needs. The grief surrounding the loss of a first-degree relative has been shown to decline slowly over the first 12 months post-loss. However, the “normal” grieving process surrounding pregnancy loss does not decline until after two years, with one in-depth study finding 59% of parents were still struggling with grief symptoms at a high rate of occurrence after those first two years. Other grief specialists estimate the average grieving process for pregnancy/infant loss to decline after 4 years have passed. It has been 2 years and 9 months since Beren died and it still affects me every day. Sometimes grief is delayed. Mothers can be busy making funeral arrangements and hosting family and friends that have come from out of town. People often distract themselves with tasks to keep their minds busy. Then after people have left town, stopped calling and coming by, that’s when it can hit them like a ton of bricks. When the loneliness will set in.  They may feel like the world has moved on and forgotten about their loss. Remember they deal with this every day. Not just the first few weeks, months and year after it happened.

“You need to get out of the house.”

It may be a while until she is ready to attend a gathering. Let her know it’s ok to not attend another’s baby shower, child’s birthday or family event. Keep inviting her. She may not go but doesn’t want to feel like she is not wanted. She will when she is ready. So try not to be offended.

“This was God’s plan.”

It might have been God’s plan but it wasn’t theirs. Religious beliefs might be unclear, uprooted or challenged during this time. Try not to push faith on them. Ask if they want to talk about religion or pray with you before assuming.

What you can do is…

Affirm the baby.

Ask the Mother is she wants to talk about her baby. I love talking about my son. How cute his little toes were. How hairy he was. The noises he made while lying on my chest. Use the baby’s name. I love hearing Beren’s name. Saying his name means you remember. We do not want our children to be forgotten. Just having someone listen to me talk about him is helpful for me. By talking about the baby directly you can help the mother acknowledge the baby and help them express their feelings.

When you can’t find the right words.

If you can’t find the words to say, just sit and hold their hand. “I’m sorry I don’t know what to say to you. But I am here to hold your hand and listen”. It’s ok to cry with us as well. We know you love us and our loss may be hurting you too. Tears are not a sign of weakness. Our bodies are designed to cry when we are in pain.

To a Mother, there is no reason ever explained why she can’t have her baby. Mothers may feel guilty or wonder if their bodies failed them. The word “why” will be used often. Why did this happen to me? Did I do something wrong? I am Beren’s Mother. I was supposed to protect him. That was my job as his mother. Don’t try to offer an answer. Tell them you miss them too. And that they are still good Mothers.

It’s never too late to reach out. 

No matter how long it has been since the death of a child, it’s never too late to reach out with condolence. The power of social media can help in this aspect. I remember getting a Facebook message from a woman I went to high school with. I live in Florida and she is still in Maine where I grew up. She wrote to me and simply said she was sorry for our loss and she was thinking of me and my family. That meant so much to me. I hadn’t seen her in over 19 years.

Ask them if there is anything you can do. They might not know what they need but still, ask. Offer to help out with chores. Mowing the lawn, picking up dry cleaning or grocery shopping. Never just stop by unexpected, always ask first. It may take some time before they want to have company.

My wonderful friends had a bench placed in memory of Beren. It is a place I can go to and feel close to him. I love when I hear that my friends have taken their kids there. Beren’s grandparents also had a tree planted for Adalyn. Offer to plant some flowers or a tree in memory of their baby.

To grieve is to love. Loving someone that is not here is so hard. I can’t show Beren how much I love him.

The list above is not exhaustive nor is it right for everyone. Traumatic grief is complicated and different for every person. If you’re not sure you’re doing the right thing then just ask them. They might not know what they need. They’re still your loved one, they’re just really hurting right now and might be acting a little differently. Tell them, “This must be so hard for you. Please let me know how I can help.” Above all, show your love. Show up. Say something even if it is just an “I’m sorry”. Do something. Listen. Be there to hold our hands. In the journey of grief, there is no destination. It is long, sad, and lonely. Tell them “you don’t have to go through this alone”.

Please, above all, say something.

Angie has worked closely with High Risk Hope to implement our Bereavement Program. We have begun offering this program at St. Joseph’s Women’s Hospital. Our Bereavement Box is available in our online store.

 

by Angie Lemont Bresnahan, HRH Mom and Volunteer

When my friends at High Risk Hope asked if I would be willing to write a piece about my son, I was so honored. As I started reading through many pages I had already written in the past about him, it became clear to me that my story was going to be harder to convey than I thought.

After a round of IVF and 3 surgeries, I was finally pregnant. TJ and I were thrilled to find out we were going to have twins. I had an easy pregnancy until my 25-week appointment on January 28th. I was sent straight over to St Joseph’s  Women’s Hospital due to a shortened cervix and was placed on hospital bed rest, where I was to remain until my due date in May.

On February 20, 2016, I gave birth to my twins at 28 weeks. Beren came first, weighing 2 lbs 9 oz. Adalyn followed weighing 2 lbs 9 oz. They were the cutest little things we had ever laid eyes on. The next few days were spent going back and forth between Beren and Adalyn’s rooms. Holding them was the best feeling I had ever felt. I loved rubbing their soft hair on my chin while smelling their soft skin. I loved the way they would squeeze my finger as we stared at each other. I would whisper how much I loved them and that I would take care of them and be the best mother I could be. My two babies that I had always dreamed of were here, and we were over the moon. Adalyn was having some complications but Beren was in good shape for being born so prematurely.

5 days later on February 25th, my life would change forever.

I was upset when I got home from the hospital that night. Beren was crying when I left and I felt so guilty for leaving. Why was he upset? Was that his way of asking me to stay, “No Mama don’t leave me, this is all the time we have left.” I kept thinking on the way home how much I wanted to stay, but something inside me told me it was time to go. I think that was God’s way of protecting me. He didn’t want me to see what was about to happen.

TJ and I were upstairs when the phone rang. I didn’t recognize the number. I wasn’t going to pick it up, but something inside me told me to. It was Beren’s neonatologist. There was a tone in his voice. I don’t remember exactly what he said, but I remember him saying something about Beren’s heart rate and asked if we would come to the hospital. The drive there took what seemed like forever. TJ was talking but I couldn’t find any words to respond. That was the longest drive of my life because I didn’t know what was ahead of me.

The long hallway in the hospital that lead to the elevator seemed longer than ever. The doors opened to the NICU and we ran past security yelling, “they called us,” as the woman at the desk tried to stop and ask for our NICU passes. As we turned the corner I saw the crash cart outside his room. I felt like someone had punched me in the stomach. I walked into the crowded room. I saw him lying there as the doctor was giving him chest compressions. They continued trying to revive him until we got there, instead of stopping after they knew he was gone. Looking back, that means so much to me. He had caring hands on him and he wasn’t alone. They waited until we got there so we could be there when he took his last breath. The doctor turned to me as if in a movie and said, “I’m sorry, we did everything we could.”

I started screaming. I kept screaming, “my son is dead.” I looked around the room at the faces and I could see the pain in their eyes. I sat in the same chair I held him in just a few hours earlier and just stared at him. I was trying to memorize his face. I couldn’t believe this was going to be the last time I was going to hold my son. I rubbed his hair on my chin and it felt so different. I held his little hand that didn’t squeeze me back. That’s when the numbness set in. That numbness still hasn’t gone away. They asked me if I wanted him baptized. The Chaplain said a few words and placed holy water on his forehead. My beautiful baby boy was gone.

As the days went by, we waited for answers. What happened to our little boy? The staff was just as baffled as we were. He was fine when we left an hour before. They couldn’t figure out how his health declined so quickly when he was doing so well. It took a few weeks for us to get answers. Beren’s autopsy stated he had an infection around his heart. We still don’t know how he got the infection.

Adalyn remained in the NICU for 95 days. As she fought to get stronger, I watched all these parents leaving the hospital with “It’s a Boy“ balloons. They were all so happy. Baby boys heading home. All the while I couldn’t take mine home. Why? I kept thinking it’s just not fair.

One Last Goodbye.

On a rainy day a few days after we lost Beren, I received a call from a hospital coordinator saying that he would be picked up that day by the funeral home. Later that afternoon, I was leaving the cafeteria to go back to Adalyn’s room. Up ahead, down that same long hallway, I heard the employee access only door open and two nurses walk five steps across the hall and enter another employee access only door. They were pushing a stretcher with a small blue blanket on it. It didn’t hit me until I was already in the elevator. I felt like someone had punched me in the stomach, again. I went back down to the first floor and ran to the doors I had seen the stretcher go in moments before. As I banged on the door, a doctor came out. I asked her if that was Baby Boy Lemont. She said she believed so. We checked with the security guard and he confirmed. That was my son. I asked if they had already left for the funeral home and they had.

I headed back up to the NICU and collapsed on a chair outside and sobbed. I didn’t want to go back to Adalyn’s room right away. I didn’t want her to see me so upset. I stared out the window searching for the hearse. One of our nurses, who I am still close with today, thinks it was Beren’s way of saying goodbye one more time. I just so happened to be walking up to those doors and look up for those 3 seconds it took the nurses to cross the hall with him on that stretcher. What are the chances?

The day Adalyn was released from the hospital was bittersweet. We were so excited to be bringing our little miracle home after 95 days. But we were leaving the only place Beren had ever been. And we were leaving without him.  After l left the hospital I was afraid I would lose my memories of him. I was afraid over time I’d forget the way he smelled and the way his skin felt on mine.

I still lay awake at night and can’t believe this happened. My son was taken from me. Why? I still can’t wrap my head around it. For the first few seconds when I wake up every morning I think, “Was this all just a dream?” Then reality sinks in and I remember that he is not in the next room.

I often wonder, what’s it going to be like for Addy? Will she feel him, see him, and talk to him? Will she feel like something is missing? Will he come to her in her dreams? Will I find her talking to him while she plays? I hear stories of a living twin seeing their sibling when they are young. Too young to explain the visit to an adult. As I watch her grow and achieve milestones I wonder about him. Who would he look like? Adalyn looks just like her father. Whose personality would he have had? Would he love books and swimming like she does? Would they act the same or be total opposites? I am left with a lifetime of wonder.

The grief process is very unpredictable. It comes in waves and is very strong. Some days I can get through the day without crying. Others, it’s unbearable. I know that he would want me to be strong for his sister. She is a perfect little girl. Despite the odds with being born so prematurely, she is perfect in every way. She is smart, caring, and full of life. Just like I know he would have been.

I hope writing this article will help others. Helping others has been so therapeutic for me. Death is not a subject people like to talk about. Especially when it comes to children. 1 in 4 women will experience miscarriage, infant loss or stillbirth. Many celebrities are breaking the silence and sharing their stories as well. We don’t want our children to be forgotten. We won’t let them be forgotten.

Resources that Angie has found helpful through her journey: Empty Cradle, Broken Heart, by Deborah L. Davis, It’s Ok That you are Not Ok, by Megan Devine, https://stillstandingmag.com/

 

 

Please help us welcome Kate Brant as our new Program Coordinator.

Kate has a B.A. in Psychology from the University of Miami, her M.S. in School Psychology from Nova Southeastern University and her M.S. in Clinical Psychology from Nova Southeastern University. Over the past several years she has developed a strong interest in program development while working in the hospital and private clinical psychology practice settings. In South Florida, she worked with both Nicklaus Children’s Hospital (formerly known as Miami Children’s Hospital) and Joe DiMaggio Children’s Hospital, helping to create group therapy programs and assisting in the development of the psychosocial piece of their multidisciplinary cardiac transplant program. Most recently in Colorado, she took on the role of Group Therapy Program Coordinator at Legacy Comprehensive Counseling and Consulting, where she researched, implemented, and managed multiple group therapy curriculums. Kate has been volunteering with HRH for the past year, spending over 100 hours assembling bags and assisting in various projects.

Kate brings a unique experience in building relationships and engaging with hospital staff, including nurses, child life specialists, physicians, and administration, to help implement programs that benefited both patients and their families. We know she will be an incredible member of the HRH team and we can’t wait to see the amazing things she does with HRH in the future.