Sibling Support: Helping Siblings Understand CDH and Loss, while also taking care of yourself and processing grief
- Charlie's Warrior of the Angels
- Apr 2
- 11 min read
A Message of Compassion and Strength for Families Navigating CDH & Loss
CDH and loss are complicated enough and when you have an added layer of holding it together and explaining CDH and its impacts to a sibling it further complicates the situation. Siblings of any age will want to understand, just as you might, but they may not be able to understand the depth of it. A CDH diagnosis is an excruciatingly complex and life altering diagnosis. There are so many factors affecting the journey a child with CDH takes. Most siblings will not be able to understand any medical language, honestly at times it may seem impossible for you. Siblings want to understand why they cannot see their sister or brother, and if they are allowed into the NICU to see them, they will, without a doubt, have questions that may feel like a punch in the gut. They may ask why they are not crying, why are all the machines on, why they are sleeping all the time or why they have a scar. This is not something I have personal experience with as Charlie was our first child. While I may not have that personal experience it does not mean that I have not talked with parents who have.
Everyone has their own CDH, NICU life and grief and loss journeys but when you need to shield, protect and educate your older children your journey may be further complicated. Children know when there is something wrong. They know that Mommy and Daddy are sad and they too want to help and understand. I am bringing in a fellow CDH Mom as well as a Licensed Mental Health Counselor, Christene Smart, to help to bring light to the realism and depth of CDH and loss.
Methods of Supporting Siblings
Loss and grief always have a unique trajectory for everyone involved. Having an older child to help to understand why the new baby is not home with you is not only agonizing but more complex than most siblings, let alone adults, can grasp. Understanding CDH and loss/grief is not something that can be put together like a puzzle.
Including your older child(ren) in activities that were normal to them prior to your baby’s diagnosis is important to keep them connected and comfortable. This is easier said than done but finding time to do your nightly routine or gently building new routines in your new environment will make them feel less disconnected and will help them feel a better understanding and acceptance of the situation at hand.
Therapy sessions can be extremely beneficial to families struggling to stay afloat. CDH, grief and loss are complicated journeys that many time families need assistance in the form of therapy sessions. These sessions can help you to understand your heart and brain and therefore better be able to communicate your emotions and more clearly communicate with your family, including your older children. Therapist are trained to help you understand life situations. For me my therapist allowed me to recognize how the new me functioned and to gain a better grasp on how to live my life as that new person. It helped me to understand how my spouse grieved and to handle situations when our grief flooded us with emotions, that many times conflicted with each other. A child still is learning how to handle these emotions, so when you feel like it is impossible to explain your emotions and thoughts imagine what your child is going through, trying to understand something that most will never gain a full grasp on, even as adults. Having the correct support system, which may include therapy, will help to build your scaffolding around your broken heart and mind, while also building a stronger foundation for your child, who is just struggling to understand.
Motherly Guilt
Incorporating the new CDH baby and all their needs or grasping the loss of your child is further complicated by the guilt that you often feel due to the time imbalance required
between your baby and your older child. You leave the hospital, you feel guilt. You feel guilt sitting next to your baby in the NICU. You try to "solve the problem" or take on too much and you can quickly lose yourself and fall into a deep depression, with an elevated level of anxiety and guilt. You cannot solve these "problems;" trust me I have tried and I know that most if not all parents in this situation have as well. You are putting too much weight on your heavy heart on something that may not be resolved alone.
Having a team of trusted friends, family and medical professionals is important in creating
a balance. You must know that this balance may not look like a traditional "balance" but one that ebbs and flows with the volatile nature of a NICU stay and/or grief and loss. It may sometimes feel like once you get yourself up that you get knocked down and have to lift yourself back up again. The lyrics of Shinedown's "Get Up" may perfectly explain how this process feels to many traveling through anxiety and grief. Many days you may have to give yourself a pep talk because getting up and taking on the day ahead may feel overly daunting and exhausting and may sometimes feel impossible. Know that there is a strength inside you that you may not have realized yet but when it shines through you will be unstoppable.
You may be a little fractured and scarred right now but you are not destroyed, you are under construction after the trauma that has forever altered you. Your child is more than their diagnosis or their loss; they are your baby. Nothing in this world will ever change that. Taking time to be in the space you are is important but know that certain spaces are detrimental for your health, especially when in them for a longer period of time. Seek help from a professional, family and loved ones if you ever feel like you are stuck in an unhealthy mindset.
Marriages and families can be profoundly impacted by trauma and loss and learning how to understand each person's method of grief and anxiety is important to a successful journey through trauma and grief. Children have an extra layer as they are left without understanding in a complete life altering daily routine. Family routines are typically annihilated during a NICU stay, especially an extended one, or the loss of a sibling. Returning back to their normal may be extremely difficult but it is possible, even if it means creating a new normal incorporating your older children into the planning process, so they feel involved, intertwining activities into the past into your current routine.
Depending on their age children may not grasp the full extent of the situation and just want to make their Mommy and Daddy happy. My son, who is younger than Charlie, will come up to me when upset and say Mommy hug and then continue to ask me if he made me feel better. I tell him every hug and smile he gives me makes me happy, but he does not have to make Mommy feel better. Some moments truly ground you and bring you back into focus. Through this journey you will surely experience many of these moments and they will likely mold you into the new you, that sometimes may feel so distant or impossible to reach.
Pour as much love into the present you and your family as you navigate through this time in your lives.
Nothing about a CDH diagnosis, NICU stay or infant loss is easy to grasp. Having older children to support while traveling this journey can be a blessing but also adds another layer to your anxiety and grief. You may be in a constant tug-o-war between staying with your infant in the NICU and going to spend time with your older children. There is no one correct way to handle this. Each person and family has to find their own way through this journey. There are resources and a community that is always there for you. We hope you feel confident in seeking out them when you need them. Charlie Polizzi’s Warrior of the Angels is here to walk alongside you and offer guidance and strength along the way.
The purpose of this blog is to provide guidance on helping siblings understand CDH and loss, while also processing your own anxiety and grief.
Perspective of Christene Smart, LMHC (Licensed Mental Health Counselor)
Christene Smart, LMHC has been a huge asset for myself in learning and building my "new me." She is perfectly honest when I need it and compassionate when I just need an emotional hug. She listens to me from where I am at, in the moment I am in. She supports me through constructive feedback and a healthy level of criticism. Having a person like her in your resource library is important during such a turmoil filled journey, be it a family member, friend or therapist. It may take some trial and error to find the right support resources but when you find them, you will know and be happy you took the time and energy to get to them.
Helping siblings before and after your loss
Don't fool yourself that you can protect your children from this grief. You can't. They feel you. They know.
You're going through the most unimaginable pain of your life, but they need you. They're struggling to understand why Mommy and Daddy didn't come home with their new baby brother or sister BUT they likely also feel the need to take care of Mommy and Daddy.
It is important to be open and honest with siblings in a manner that is age appropriate. This can be a good time to remind yourself that you know your children best and despite the menagerie of feelings you're experiencing in your grief, that remains true and you know how to help them through difficult emotions; you've been doing it their entire lives!
Let them see you grieve. This is a natural and NORMAL process in response to what you and your family are going through. Fall apart and let them see you put yourself back together...because that's what grief is. Sadly, they will experience grief again in their lives, even one day with regard to you.
Pour the love into them as you always have. Your children will help you move through your grief.
What about rainbow babies?
This is very personal. Depending on how you have processed your grief, you may have walled off memories related to your loss; others choose to keep their lost little one relevant in a more overt way. Whatever you need to do to survive this pain is acceptable in this regard. You are not "strange" or "sick" or "weird" for choosing to live with your little angel's energy in you and your children's lives. Your loss is forever a part of you. It changed you. That's okay.
From the perspective of a fellow CDH Loss Mom, Reagan Sparks
Reagan is a fellow CDH Angel Mom whose CDH baby, Alana, is coming up on her 1st Heavenly Birthday and Angelversary. I have had the privilege to talk with her virtually and
she is truly a beautiful soul with a gorgeous angel up in Heaven. She writes about her experience, having an older child, Sylas, who was too young to visit his sister in the NICU. She beautifully states some simple things she does to incorporate Alana and Sylas into her family's journey.
We used Becca's book "Alphabet Soup" to explain CDH to Sylas. Alana was born on April 22nd, 2025. She passed on April 25th, 2025. Kids under 4 were not allowed in the NICU, but video chatted for Sylas to see. Unfortunately, his first time physically seeing/touching her was in the "butterfly room". It took a while, but he understands what happened. We do family therapy around grief, which I believe to be helpful. He even picked a garden decoration to leave at her headstone. He mentions missing her and wanting her to be alive again. We always say, "We wish she were alive too, hun. Do you want to talk about it?" Sometimes it's yes, other times no, but offering allows for a safe place to talk about her in his own way. It's clear he loves her and knows she died. We take it one day at a time.
Emotional Support and Community Resources
The journey through loss and grief is never easy, but no one should walk it alone.
Charlie Polizzi's Warrior of the Angels Foundation is dedicated to raising awareness, supporting families, and funding research. At Charlie Polizzi's Warrior of the Angels, families can find resources, education, and a community that understands the heartbreak and the hope of CDH.
Additional Trusted Resources:
Past Blog Topics:
Frequently Asked Questions About Helping Siblings Understand CDH and Loss, while also taking care of yourself and processing grief
What is the right balance between spending time with my older children and my baby in the NICU?
This, like many things on this journey, has no real right answer and could be a whole blog topic. This is hugely dependent on if your child is in school, the age of your older children and if you have relocated. Helping them with schoolwork, especially if they start to show signs of struggle, is important to minimize your child’s stress. This could be having a family member or friend assist in supporting them.
If your child is too young to grasp many of the concepts around your life right now, build new normal routines and bring in activities that you have done in the past so there is a sense of consistency in a world of chaos. This could be belly time on a same mat, at the same general time of day. This could be Pre-K activity books at the same time of day. Consistency is key for these younger siblings so they can continue progressing in development as you all travel through this journey together.
When families relocate for treatment, it creates a whole new level of change that needs to be addressed. Everything is new and Mommy and Daddy are sad and many times anxious and tired. Finding something to help bring you all together, even if it is for a short period of time, can really help families during relocation. This could be finding an exercise class, a park, going out for a meal or coffee, a spa, a game night or just going for a walk.
If I have relocated for my baby's treatment, how do I create a new normal for my older children?
As your child’s Mommy and Daddy, you know your children best. Find things that they have always loved at home and try to incorporate that into your “new normal” when living relocation life. Does your child like gymnastics? Register them for a class. Do they like playing the piano or guitar? Sign them up for classes. If they love the library. Bring them to the local library. Try to incorporate your “old normal” into your “new normal.”
A Final Note
There are so many levels to this journey and supporting your baby’s needs, your older children’s needs and your own needs are just the icing on the cake. Many days you will feel like you have not accomplished any of these, and that is okay, as long as you remained healthy and as a team stood up and took on the day as best as you could. Some days will be harder than others, accomplishing every desire and need may not be plausible. Set realistic goals for yourself each day and know that those goals may be impacted by changes in your baby's treatment plan or their stability at that time. Realistic goals during this journey may be as simple as putting one foot in front of the other while helping your older children through this tremulous journey. Remember that this time of your life may be heavy, and it may feel like you cannot bring yourself out of this depth of pain and struggle, but you are so much stronger than you believe. Know that you will come out stronger and more beautiful than you could begin to grasp right.
Though this journey may feel isolating, families are never alone. With the right balance of resources and support, like many of resources provided by Charlie Polizzi's Warrior of the Angels, parents can face their diagnosis, NICU stay, and loss and grief journey with strength, knowledge, and hope.
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