Families Grieving Babies Lost to Congenital Diaphragmatic Hernia

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CHERUBS offers grieving parents a safe place of support where we understand what a broken heart feels like.

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If You Have to Say Good-Bye

Sadly, some babies diagnosed with CDH will not make it past their first few hours, days, or weeks of life. The medical personnel will explain the reasons your baby is deteriorating and go over options as far as improving your baby’s condition and whether or not ceasing treatment should be considered. This is never an easy decision for parents or medical professionals to consider, and you will be given as much time and support as necessary to make your decision. Some parents can see their baby struggling and will find that the baby lets them know when the time arrives.

Below are some suggestions for when the decision has been made:

Take many photos and videos of your baby. These will always be precious to you.
Contact Now I Lay Me Down to Sleep to see if there are resources in your area. Their services are free of charge and they will provide remembrance photos of your son and daughter.
Write down your baby’s day-to-day care and any special moments in a journal to keep.
You may want to invite visitors to see your baby before the time comes. The hospital will try their best to fulfill all of your requests, but please be mindful that many of these units have strict visitor policies to protect other babies and their parents.
Arrangements to have your baby baptized in the unit may be made if you are interested.
When the time comes to remove your baby from life support, you may either be present or wait for the nurses to bring your baby to you. This may be the first time you and your partner have been able to hold your baby, and this may be extremely overwhelming.
You are encouraged to bathe and dress your baby, and to hold them and talk to them for as long as possible. Do not be afraid to hold your baby after they have passed–many parents have regretted not doing so.
You may also wish to take photographs holding your baby, as well as hand and/or footprint impressions.
There is no right or wrong way to deal with emotions during these devastating moments. Family and friends are invaluable support, and you may also find it useful to speak with a hospital counselor or chaplain if they are available.
Finally, tell your baby that it is okay to go. Studies show that people of all ages, even newborns, seem to pass on more peacefully after hearing these words.

Advice From Other Grieving Parents

“Do not allow anyone to rush you. Take as much time as you need to say goodbyes. I spent about 45 minutes with Ryan before they let us take him to pathology, which is against hospital rules, but we broke the rule. I regret that I didn’t hold him more. Also, this sounded weird to me, but the nurse told me about it the day before Ryan died. She told me we’d unhook all the tubes and wires, bathe him, put baby lotion all over, comb his hair (cut a lock of it too!) dress him, wrap him in a blanket and hold him. Take pictures and say our goodbyes and explain why God was taking him from us. That part I couldn’t figure out to explain, still can’t! I kept all the stuff the hospital used on Ryan: scissors, pacifiers, diapers, his toys, clothes, the sign on his bed. For 29 days, he collected quite a bit of stuff. It’s all in an air tight box known as ‘Ryan’s Box’.” – Cindy Mohr

“Ask for pills to dry up your breast milk or continue pumping until after the funeral. Hugs can be very painful when you’re engorged.” – Rhonda Montague

“I am making a shadow box with Thomas’ mementos. His little hat and socks and bracelets and some cards, etc. are put into a special frame which will hang on a special wall. This way I can look at Thomas’ memories every day without opening a box, and it is such nice decor too. I also had one made for my older son Michael, and he enjoys looking at it too.” – Gabi Frietag

“In our case, it wasn’t a sudden at-birth death, but after 3 weeks of intensive care. I would suggest having as many visitors as possible. The more people who actually meet your baby before they leave, the better. Makes them more real, helps affirm they were really here! We celebrated his life with a full funeral, reception back at our house, etc. These events were important, for us and well as friends and family. Many told me it gave them a chance to really focus on what had happened. It has been good for me to gather everything about Fletcher’s short life together. I made an album of sorts and have a huge box for all the cards that came in. Now it’s all together to take out and ‘visit’ when I’m in the mood. It has helped me to reach out to others who have suffered a similar loss. I’m in a support group with wonderful women who all had late or during-labor still births. Mine was the only one ‘here’ for a while, but it hasn’t really made a difference in the way we have connected. But truly, the two women I met through Cherubs have been the best relationships of all. We give each other strength and support regularly.” – Laurie Stusser-McNeil

Why My Cherub?…. A Letter To Grieving Parents

Dear Grieving Parent,

It is not because you were not worthy of your cherub–you were and are. You are so worthy that you have been entrusted to carry on your life’s goals and theirs as well. You are so worthy that your cherub chose you to be his or her mommy and daddy during their short time here. You are so worthy that you were blessed enough to be the parent of a living angel … a child placed on earth to touch the hearts and lives of so many people. So much love and so many lessons put into such a short time. Not everyone can comprehend that great blessing and that great responsibility–but you were chosen.

It is not because of your faith or doubts. It is not because you didn’t pray hard enough or because not enough people prayed for your cherub. There are cherubs who have had 1000’s of people around the world praying for them … and they did not survive. We have had cherubs whose parents do not believe in religion and they have survived. Your prayers for a miracle were not refused. You have received miracles too … even though they may not be the one you wanted most. Prayers can sustain us through whatever CDH throws as us, helping us to make the right decisions, bringing us peace no matter the outcome … and they can lift us up and carry us through grief.

It is not because you made a bad medical decision or did not fight hard enough for your child. Your cherub had a whole medical team fighting for them alongside of you. You made all the best decisions that you could for your cherub. You were and are the best parent to your cherub that you can be. There are 1000’s of healthy children who do not have parents who would fight for them. Your cherub was blessed to have you as parents just as you are to have had the opportunity to be a parent to your cherub. If CDH has taught us anything it is that it plays by no rules. Children with no diaphragm and little lung can survive while children with two full lungs might not. It has taught us that lung function is not the deciding factor. It has taught us that sometimes the best care in the world is not enough.

It is not because you couldn’t offer your cherub the support or resources needed for a special needs child. It is not because you lack patience or skills. We have grieving members who are doctors, nurses … we have parents of survivors who were teenagers themselves. We have grieving members who are amazing, amazing parents and we have parents of survivors who have lost custody of their cherubs. We also have many, many parents of survivors who are amazing and prepared and ready to be wonderful parents to their cherubs. CDH does not care who is ready, who is able, who is best qualified to care for a cherub and who is not.

It is not because you didn’t love your cherub enough. If love could spare babies from CDH, this horrible birth defect would not claim one more life. CDH shows no favoritism. It shows no prejudice. It truly is the luck of the draw who survives and who does not. It does not mean you are better or worse than anyone else. It is not fair. Your cherub did not choose to leave you. But they did choose to spend their time here with you. They did not choose wings over feet. They did not choose Heaven over staying here with you.

There is no good answer to why your cherub did not survive … but there are hundreds of answers as to why he or she should have. At CHERUBS, we all know the pain of CDH. The pain and grief of having a child born with a severe birth defect … some grieve over the loss of a healthy child as they struggle to deal with CDH in their surviving cherub and the loss of a dream. Some grieve a never-ending grief of losing the dream and the life of their cherub. But we all grieve, and we all have questions that we may never get answers to.

We have all lost a lot. So many parents are grieving the losses of their babies right now. The CDH community has lost so many babies that we have all prayed for, loved from afar. But we have gained a lot too. So have the family members, friends, and even strangers. Each cherub has left their mark on this world and left it a little better than they found it. That is more than most people do in lifetimes that last decades. We should all follow such beautiful examples as these children have left for us.

Yours Truly,

Dawn M. Torrence Ireland

President, CDH International