"What I wish I had known" Real women who received a life-limiting diagnosis for their baby giving real answers.
Real Women Answer these Questions:
What do you wish you would have known about this journey?
What is one thing you would tell another woman who just received a similar diagnosis?
What would you tell her to expect?
What hope would you give her?
What was most helpful to you?
Any advice or wisdom that you wish you had had?
From Shalon Gough, mama to Joshua, diagnosed with Ohtahara Syndrome at 6 weeks old.
What would you tell her to expect?
"That your heart is going to break a thousand times, you are going to be asked and expected to learn things that seem impossible and overwhelming. You will do all of these things and more because you and only you know your baby better than any nurse or doctor ever will. Even dropping an NG tube and eventually changing a G tube button at home after watching a youtube video."
What hope would you give her?
"Your baby will know you. I promise. Our first doctor said our son wouldn't know me (fired him the next day). Joshua learned my voice, my touch, he already knew the sound of my heart and some nights lying on my chest was the only thing to comfort him."
What was most helpful to you?
"Support. Find a good hospital who will put you in touch with the PACT (pediatric advanced care team), they will be a great resource. Make friends with a palliative care doctor, they know all the tips and tricks."
Any advice or wisdom that you wish you had had?
"To soak in every moment you can, I wish I hadn't been so frustrated in certain moments. I honestly thought Joshua would live so much longer so things seemed so scary and like too much to handle. Looking back that was the shortest 22 months of my life.
"Also, I didn't appreciate Joshua fully until a neurologist sat me down and told me I was going to have to grieve twice. Once for the child I thought I'd have and then I'd be able to love Joshua for everything he is/was. The second time then being when he'd pass; he was 8 weeks old when she told me this."
From Brooke Stone
"Grief comes in 2 stages. The moment you receive the diagnosis you grieve the life you could have had with your child. The moment your child passes is a whole other stage of grief.
Hope for me is knowing my child is whole and healed now. And that I can reminisce on moments that were beautiful and joyful and still be sad at the same time.
The best wisdom I received was that there was no way I could make the “wrong” medical decision for my child. God had already orchestrated the minutes and the days and there’s nothing I could do to alter that. If we were faced with decisions we should pray and go with our gut, that’s all we could do."
From Katelyn Marquardt, mama to Theodore, diagnosed with Anencephaly at our 21 week anatomy scan.
What would you tell her to expect?
"I wish someone had told me to expect people to either not know what to say or that they may, unknowingly, say the wrong thing; I don’t know how many times I got told “well you still have x weeks his brain can still develop” even after explaining exactly what his condition entails. Expect to research your baby’s condition until you have memorized every bit of information and statistic that is out there and still have questions that just can’t seem to be answered even by your doctors. Expect to wake up a thousand times a night with questions to ask your doctor."
What hope would you give her?
"Although it may seem like it, you are not alone. Seeing your baby will make it all worth it. Every minute you spent trying to prepare yourself, every unexpected tear that seems to come at the most inconvenient time, every night spent researching or thinking of questions instead of sleeping will just disappear as soon as you see your baby."
What was most helpful to you?
"My doctors were amazing and let me have appointments every two weeks just to ease my mind and heart a little and they did quick ultrasounds at every appointment. Having a supportive environment and a reliable support system. Meet with the palliative care team at the hospital you are delivering at. I found starting counseling while I was still pregnant to be extremely helpful as well. I also requested to be taken down when there was the least amount of people possible and to an exit that was less likely to have babies coming in/out since Theodore didn’t get to go home with us."
Any advice or wisdom that you wish you had?
"Savor every single moment and take lots of pictures. Ask the nurses if you can keep the paper that your contractions and baby’s heartbeat are printed on, I wish I had asked to keep it sooner than I did because Theodore didn’t like to stay still while I was on the monitors so I only have a little bit of his heartbeat on paper. Also ask to keep the blankets baby was wrapped in, the tape measure they were measured with, the hat they wore, and their hospital bracelet. Request a room in the quiet wing of the mom and baby floor. Give yourself grace and permission to grieve however your grief presents itself. Most of all, take the whole journey one minute and one step at a time."
REAL MAMAS WITH REAL ANSWERS
Take pictures of your bump. Ask for prayers. Cherish every second together. Take your time. Know you did everything you could. They were never alone, always fed, always warm and always knew love. Your friendships will change... you don’t think they will, but they do. People scatter after your baby dies. It’s the unspeakable and therefore it’s easier for them not to speak to you for fear of upsetting you or “reminding” you. It’s not you! It’s them! It's important to know where to send the body before you get to the hospital, one less thing to worry about that day. katiectalman
I wish someone would’ve told me to soak it in and not be so sad in anticipation of losing our Ella ...we held her for 27 hours. Grief was overwhelming during that 27 hours. I wish I would’ve enjoyed her more while she was in my arms. Amy Lagomarsino
Grief is not the enemy. It’s what happens when we love someone deeply. The best way to navigate grief is through it. Let it be what it is, without “should-ing” ourselves. Let others take care of you. The more we try to push, hide, or deny the pain of our loss, the more we distance ourselves from love. And for me, more than anything what made the difference was bringing all my raw questions to God and asking Him to show up in it. And He did. Now nine years after we discovered our son wouldn’t survive life after birth, I can fully say that grief has ushered in a deeper grace.sarah_westfall
We did not know our daughter would be stillborn at 38 weeks. I wish I had bathed her and dressed her. I wish I had asked if a Cuddle Cot was available for our use. I am glad our families were with us and we had Now I Lay Me Down to Sleep. Her pictures are my most precious belongings. maryalicecoonmchale
I wish I had known that it Jonah passing away would be different that his brother the year before. Makyah took only about 2-3 minutes to fade away. Jonah's was both sudden and forever at the same time. Longest 10 hours of my life, and it doesn't make me a bad mom to take bathroom breaks during those 10 hours of him passing away, it makes me human.Elizabethannbraswell
I had a c-section and the doctor suggested I be put fully to sleep rather than a spinal or epidural so it would be “easier” on me. I regret that because my memories afterward are so fuzzy. I wish we would have really taken our time with our daughter after she was stillborn to soak her in. I felt hurried, not by the hospital, but really just to “get through it.” I would have had someone there specifically to do photos. Luckily, a friend brought a kit by so the nurses could make molds of her little feet. jennycummingsphoto
I wish I had known that life wasn’t over. It felt like it was in the midst of the pain. It just felt like I could never recover from what was happening to me and my baby... but that was a narrow perspective. I was blinded by grief but then Joy came and found me. God doesn’t leave us in the valley. ❤️ katelynjames
A few very helpful thoughts from mcheids:
The pregnancy following the diagnosis is so incredibly hard. Be kind to yourself. It is not your fault.
I'm so grateful for the photographer who took photos as we said our farewells to our baby boy. We cherish those photos, as painful as they are.
I wish we would have had the option for a cuddle cot or caring cradle. Take your time with your baby.
We chose to support research that is studying the genetics behind the awful birth defect that took our son’s life. We contacted the university and had a kit sent prior to his birth. The hospital staff helped us with the kit contents- collected a tissue and blood sample from him to support research
We had a memorial service with close friends and family. I am grateful for the time to gather and lament with dear loved ones.
My husband and I had the chance to get away for a few days not long after our son’s passing, as I was still on maternity leave. I’m grateful for that time away with him.
Most people won’t understand the trauma you’ve been through. Many will say unhelpful things (aka “you can always have more”) and platitudes. Many won’t say anything about your loss.
Accept help/support, give yourself incredible amounts of grace and compassion. Be kind to yourself. It will get easier. Yoga, nature, music, therapy, poetry, community, my puppy, and time have helped me.
Everyone grieves differently, including your partner.
Remain hopeful over the possibility of joy again.
Hugs to you all who share this ache.❤️
As to how to help someone dealing with a terminal diagnosis, say to that momma- “Sweet girl, you are going to make it through this. I don’t know what this journey will look like, but I’m committed to walking through it with you.” Then just be there, walk alongside her, she will appreciate it so much. jennycummingsphoto
I wish someone would have explained the difficulty that would come with being around others and how other people would respond. People don’t know what to say. So they don’t say anything and that made me feel like my daughter didn’t matter. Or they didn’t care. This was one thing I had, and still have, such a hard time with. I returned to work in May and there are co-workers that have never said a thing. Not even “I’m sorry” and that hurts. mrsalagomarsino
Our baby son, Graham was diagnosed with Leukemia at 3 days old. After completing chemo treatments with no progress and exhausting all other options we said goodbye to our son. I wish I would have known about the Caring Cradle or Cuddle Cot because it was never offered to us even though there was over 6 on the floor. This would have given us more time with our baby to say goodbye and allowed other family members to say goodbye as well. kristanhughes
I wish I would have known so many people are standing by to offer whatever they can to help you during this time. Let them. Allowing people to help has allowed us to solely focus on our son and nothing else. grateful4graham
I wish someone would have told me sooner my sons life wasn’t defined by the statistics of his medical condition. For me, he had a “20% chance of survival” during pregnancy. Medical language can be so harsh and it is already so difficult to grieve, celebrate and hope. We chose to celebrate Reid. Yes, we were realistic in our hope, but we never lost sight of celebrating him, even though it was hard. All this to say, a life can never be limited to a statistic no matter how small. 💙 flylittleblackbird
Something our pastor reminded us was to take the long, eternal view. In those early days, my husband and I would take turns really losing ourselves in what the purpose could be for our loss. The Lord gently and SLOWLY turned our eyes toward heaven and Himself, the only place we can ever place our trust for sure. Misswyolene
We unfortunately did not have a cuddle cot but the nurses allowed us to put the perinatal pads that they use for vaginal deliveries that are cold underneath our son to give us the most time we could. Just a tip in case a cuddle cot is not available.Grateful4graham
Savor any and every moment, and take photos! I felt so much shame and uncertainty about how our baby looked, I don’t have many photos of him. I wanted to protect him and our time together. But really missed an opportunity to capture those precious moments. ❤️ cynthiamercer
