Prenatal Life Limiting Diagnosis: Bilateral Multicystic Dysplastic Kidneys | Q&A with Marybeth Lobato
I am honored to share an interview with Marybeth Lobato about receiving a prenatal life-limiting diagnosis for her daughter Ava Brienne. You can get to know Marybeth a little more and follow along as she navigates life after loss over on instagram: @marybethnicole.
Marybeth, thank you for sharing your story with us. We are so grateful.
If you or someone you know has received a life-limiting or terminal diagnosis for your baby, please check out this resource page with information and helpful resources for navigating this season.
Hi Marybeth, tell us about yourself.
I am 28 years old and live in Roswell, NM with my husband and our two dogs and two cats. We like to spend time at home, but we also like taking a lot of road trips around our beautiful state. We like seeing new places and trying new things. My husband is much more outdoorsy than I am, but we somehow always seem to find a balance between what he likes and what I like. We like to laugh a lot and try to find beauty and joy in every day, even when it gets hard to do so.
Tell us about your diagnosis.
Everything in my pregnancy had been going great! The baby's heartbeat was so strong and I was feeling great. We went in for a routine 20 week anatomy ultrasound, and were told that there was something wrong. We had to come back two days later to meet with a Perinatologist. It was then that we learned that our baby had bilateral multicystic dysplastic kidneys.
This means that both kidneys were so covered in cysts that they were not able to function. Without functioning kidneys, the baby could not produce urine, and therefore, there was very little amniotic fluid. Without amniotic fluid, the baby's lungs could not develop.
The prognosis was not good, and we were told that our baby would very likely live for less than an hour if we continued on with the pregnancy. We got a second opinion from another doctor in Albuquerque the following day, and unfortunately, that doctor confirmed the diagnosis and went into even more detail about the prognosis.
Our baby would be born with a bell shaped chest and wouldn't look "normal." Our baby would be tiny, and would likely not even be able to live in the womb if we decided to carry to full term.
photo by Sara Love Photography
Tell us about the options you were given and your decision to carry to term.
The first option we were given was to terminate the pregnancy. We were also given the option to induce early labor. Finally, we were given the option to continue carrying our baby until full term, or until we decided to deliver.
For me, termination was never an option. My husband and I had fallen in love with this baby the second that we found out that I was pregnant. We could not give up on someone that we loved so much.
It was scary knowing about all of the complications, and ways that we could potentially lose the baby before we got to term, but we had to give this baby every single chance that we could.
The days following the diagnosis were dark and scary but we knew how much we loved the baby, and we knew how much we wanted to fight. We could not give up all hope, and still prayed for a miracle. We clung to every bit of hope that we could.
If I got the diagnosis today, I would absolutely make the same decision. I do not regret fighting for my baby, and sharing her story.
How did you prepare for your baby's birth?
There were a lot of doctor visits. We had three different teams of doctors in two different cities. We wanted to make sure that the diagnosis was correct, and we also wanted to make sure that we would be able to honor our baby and spend as much time with our baby as possible.
We met with doctors at different hospitals, and decided which would be best for us. Once we made that decision, we were able to start making a birth plan with our team of doctors and nurses. We wanted to be sure that the hospital had a NICU, just in case. We also made sure that we had a team that would honor our wishes.
We wanted to spend time with our baby and meet our baby. We knew the prognosis, but decided that a C section would be worth the extra effort. Not all doctors would honor this, so we made it clear that these were our wishes.
We also booked a photographer to come photograph the birth. This was the greatest decision that we made. We delivered at a hospital that had cuddle cots, which keep the baby's body cold, and allowed us to keep our daughter with us or the entirety of our hospital stay.
The team of nurses there also went above and beyond to make sure that we could have as many memories with our daughter as possible.
Her birthday was beautiful, and was the best day of our lives. Yes, we lost her the same day, but we were so overjoyed to meet her and to spend time with her, that the joy overshadowed the pain.
Is there anything you wish you had done differently or known to do/expect?
Our daughter was breach, and had little to no chance of flipping. We knew that vaginal birth would be too traumatic on her, and that she would likely not survive that process. I decided to have a C section so that we could spend as much time with our daughter as possible. I absolutely do not regret that decision in any way. I do wish that I had done more research on C sections, and how my body would respond. I knew that I was having surgery, but I did not know that I would bleed for up to six weeks after surgery.
I also wish that I would have been prepared for my milk to come in. I was too busy preparing for my daughter and mentally preparing for delivery, that I was caught a little off guard when I was not able to take care of the changes that my body was going through. Luckily, my husband and my family were there to help me through that.
What do you wish you would have known about carrying a baby with this diagnosis to term?
There are so many emotions surrounding the pregnancy and delivery. I allowed myself to feel everything, and I am glad that I did. I wish people were able to understand and realize what a blessing it is to carry a baby with a life-limiting diagnosis.
Obviously, I would do anything to change the diagnosis, and I would give up everything that I have just to have my daughter, Ava, with us. But in my pregnancy and in her short time with us, she taught us so much, and she made us grow as people.
She touched so many lives and was loved by everyone who heard her story. Pregnancy was a dark time, but Ava was such a bright light at the end of it. She is my biggest blessing and my greatest joy, and I am completely honored to be her mommy.
Tell Us About Your Baby's Birthday.
August 7, 2019 was the greatest day of my life. There was so much fear and anxiety surrounding Ava's birthday. I had a C section scheduled for 12:30 that afternoon. We went to bed late the night before, and at 4:15 the morning of my surgery, my sweet Ava Brienne decided that she was ready to come. I started having contractions and totally downplayed them, not wanting to wake anyone up. About an hour later, I noticed that I was bleeding. I decided to wake my husband up, and we got ready, and drove to the hospital.
Thankfully, we got there and everything with Ava was still looking good. She may have had bad kidneys, but her little heart was so strong.
We called in our photographer and our team made sure that everything was in order and that proper genetic tests would be ordered.
Ava Brienne was born at 11:20 the morning of August 7. She was bound and determined to come on her own time. That's just how Ava was. We were told that she would never cry, and likely survive for less than an hour. Ava came out screaming, and gave us the most beautiful two hours of our lives.
The second I heard her cry, I felt a love and a sense of pride unlike anything that I had ever felt before. She died peacefully in my arms, listening to my heartbeat, a sound that she knew well. Her daddy and I got to love on her and tell her how proud of her we were, and how loved she was, and always will be. We each got to hold her, and kiss her, and hold her tiny hands.
The pain of losing her is indescribable, the worst pain I have ever felt in my life. On that day though, we only felt joy. Joy that we got to meet our daughter, and joy that she let her personality shine through.
She was sweet and sassy, stubborn and incredibly strong. She is the greatest thing to ever happen to me.
What do you wish you would have known about labor and delivery and the hours following?
I wish I would have known how beautiful Ava's birthday would be. I wish I would have known how much joy she would bring into my life, and I wish that I would have known the impact that she would have on people.
Getting the diagnosis was devastating and terrifying. I knew that some good would have to come out of our story, but I couldn't figure out how. By being open and sharing our story, Ava has been able to touch so many lives. There was and still is so much beauty surrounding Ava and her birth. If I had to do it all over again, I wouldn't change a thing. It was important to me that I have no regrets, and I don't. I am thankful for everything that I did.
That being said, I wish I would have known that pain and joy can coexist. I am early in the grief process, so it is still hard for me to find joy, and hard to find a balance between the two. I do have hope that we can be happy again, and that our home will be a happy place someday, and for now that is enough.
What encouragement would you give to another mom who has just received a similar diagnosis for her baby?
I would tell another mom to enjoy your pregnancy. Read to your baby, talk to your baby, sing to your baby, and enjoy the time that you do have with your baby.
It is painful to do, and there are a lot of tears, but so worth the pain. I would tell anyone to fight for their baby, and to give your baby a voice. Love your baby as much as you can for as long as you have them. You will always love this baby, but enjoy the time you have while your baby is physically with you.
Stand up for what you believe in, and when you make a decision, stick to it. Your doctors will try to change your mind, but if you stick to your beliefs, they will respect you.
Most importantly, reach out and seek support. This is a VERY lonely journey, but you are never alone. So many have walked this path before you, and so many have gone on to find happiness, you can too, as impossible as it seems. (This part, I still have to tell myself). When you have a dark day, reach out.
There is nothing wrong with going to therapy and seeking help. My husband and I started therapy as soon as we got Ava's diagnosis, and we still go. This is a practice that has saved our marriage.
There are so many organizations that help people in this situation. I reached out to Abel Speaks, and they were amazing, and able to talk me through some of the decisions that we needed to make. They were also able to put our minds at ease, and give us hope that we would someday find happiness.
We also looked into resources at different hospitals in our area. The hospital that we chose has a HUGS (Helping Understand Grief) program that completely changed the game for us. They walked alongside us and helped us come up with a birth plan. They took photos and have us some beautiful gifts. They were able to give us time with Ava and allowed us to make memories with her. For this we are forever thankful.
If it is an option, I would recommend reaching out to Now I Lay Me Down To Sleep, a program that sends photographers to the hospital to photograph your baby's birth. We had a photographer, and she was able to provide some beautiful photos. The hospital where I gave birth is three hours away from my home, but it was well worth the trip in order to make beautiful memories with our Ava.
Give yourself grace, and ask others to give you grace. The days following are dark. Emotionally, you may not be capable of doing a lot, and that needs to be okay. You need to allow yourself to feel every emotion. Do not run from emotions or force yourself into situations that make you uncomfortable.
I am still having a hard time leaving my house. Home has become a sad place, but going out and facing the world is so much harder. Some days you are capable of going to dinner with friends, and other days you are only capable of getting out of bed, both are okay, as long as you keep on going.
Some days, it feels impossible to move forward, most of my days feel like this. But then I remember how proud I am of my daughter, and how I want to make her proud, and give her a voice, and I keep going because I know it is what Ava would have wanted. Ava is in everything that I do, and she always will be.
What encouragement/advice would you give to someone who loves a mom who has just received a similar diagnosis for her baby?
Always ask how the mom is feeling or how she is doing. The answer will never be great, but she will feel cared for, listened to, and loved. It is an extremely lonely journey, and having people ask how you are doing helps so much. We don't always want a phone call, or small talk, or distractions, but a text of "how are you doing?" or "I was just thinking about you and wanted you to know that I love you," can mean the world, and honestly can be the difference between a good day and a bad day.
People also need to understand that the baby's dad also goes through a lot. So often, the focus is on the mom, and for a good reason, we are the ones carrying the baby, feeling the kicks and movement (or lack thereof). As moms, we are the ones that are more emotionally tied to the baby during pregnancy, but the dad goes through a range of emotions as well, and people need to check in on dad as well.
My husband and my family were extremely supportive during my pregnancy and following Ava's birth and death. I am still in the very early stages of grief. Ava died less than a month ago, and we only had her funeral a week ago (at the time of this being written). The emotions are all still fresh and I am VERY much still in the middle of the really dark days. Ava is the best thing to ever happen to me, and I refuse to not talk about her.
My husband and I talk about her and look at her pictures all the time. We make an effort to do one thing each day either to honor Ava, or do something that she would enjoy doing. Some days are harder than others, some days we are capable of doing more than others. Some days, all we are capable of is taking a short walk, and talking about her. Some days, we are putting reminders of her all over our home. It hurts to talk about her, but it hurts worse to not talk about her.
Bring your baby up in conversation, because your baby existed, your baby was a person, is still a part of your family, is still loved beyond belief, and has impacted your life in ways you may not even realize yet.
My husband and my family have been amazing support. They have taken care of me, and continue to do things to remember Ava. They talk about her, we cry together a lot, they take flowers to her grave, and they celebrate and honor her.
To know that your baby is being remembered and celebrated is the biggest comfort.
After Ava's funeral, it felt like a lot of people (family included) just moved on like nothing ever happened. They went back to their daily lives and stopped asking how we were doing. That hurts more than anything. Yes, it hurts to talk about her sometimes, but we love her so much and are so proud of her, it hurts worse not to talk about her.
