5 Life Changing Moments in a Grandmother's Journey with CDH

I remember the day my daughter, son in law, and two-year-old granddaughter walked into my work with the news. I will never forget it. I had no idea what was in store or the significance of the diagnosis being shared with me. My unborn granddaughter was diagnosed with CDH.

1. The Diagnosis

Congenital Diaphragmatic hernia (CDH) is a fetal abnormality that occurs very early in pregnancy (10-12 weeks), in which the baby’s diaphragm does not form properly. An opening in the diaphragm leads to contents of the abdomen — such as the stomach, small intestine, spleen, liver or kidney — developing in the chest cavity instead of the abdomen. These displaced organs prevent the lungs from normal development. When the baby is born, the lungs are often small and do not work as well.CDH is rare, occurring in one out of every 2,500 to 3,000 births. It varies in severity from mild, causing no neonatal effect at all, to very severe, causing immediate distress and sometimes death. CDH is not related to anything the mother did or did not do during pregnancy.

We were all three in the dark. None of us had heard of CDH. Googling it was terrifying. The most prominent emotion I felt that day was pain. Pain for my daughter and son in law. None of the children between my sisters and I had any issues. This was a subject that was totally foreign to me in general. I knew enough to know it was not good news. I knew the kids had a terrifying road ahead. My heart broke for my daughter because that is what happens when your daughter’s heart is broken. I felt disbelief. Like there must be some mistake. Maybe it's not as bad as it seems. To be quite honest, I carried that opinion the entire pregnancy. I realized that day I am powerless. I’ve always been able to help her through everything she was going through. This was different. I realized I could not change this, make it go away, pay to have it disappear, or even attempt to encourage her. I was defenseless. This is not an emotion I’ve felt often in my life.

2. The First Couple Months After Diagnosis

I realize now I didn’t do enough to support them. There was so much more I could have done. I have a hard time with the big stuff. Medical stuff. Life and death. After losing my Father suddenly, I developed a complicated block out method for dealing with these type of things. I failed to acknowledge his death in a healthy way. It seems to be my M.O.

I developed a knack for blocking out things too serious. I did not realize until the week of my granddaughter's birth how incredibly selfish it was of me. My daughter could have benefited from my participation. It was never my intention to drop the ball as her mother. I did however, drop the ball.

In my mind, I felt I would irritate the situation. I worry and ask many questions. I decided they will have so many questions on their own. Adding mine would be overwhelming and stressful. I wanted to give them their space to deal with their unborn child as a married couple. I was trying not to be the meddling mother in law. Now I feel I could have done better.

I will say in my defense, I am far from a nurse. I am no good with blood, needles, surgery's, broken bones, stitches, etc. My fear of all this was the obstacle I was unable to overcome. This is the moment I realized I am not the perfect mother I always thought I was. I always supported my kids through thick and thin. I’ve never been scared of anything my kids needed to overcome. Until now. I always said I was a mother first and it was my job. CDH changed all this.

3. Why us Mom?

On a positive note I did shine many times throughout the pregnancy. I don’t feel it was all bad. My first shining moment was when my daughter told me she was mad at God. When she didn’t know how to feel. When she didn’t know whether to look forward to the birth of her daughter or dread it. When she was afraid to be excited about the baby just in case she didn’t make it. These are the times when I stand up and say “I got this one folks, sit down!” I know this is an important time to help my daughter. I know she needed this. I also know I helped her.

When these times came, and they did. I would calmly remind her that we don’t know God’s plan. We may never know God’s plan. I told her to find a happy medium between optimism and reality. This is hard to achieve and an oh so delicate balance. I told her to look forward to this baby as if she were to live a long life. However, remember one thing. If God takes her, their is good reason.

Maybe she is an angel sent by God. It is possible God sent you a real live angel. It may be the baby’s sole purpose is to assist her dad, mom, and big sister, in a way we may never know. If she is taken too soon, it is because she was never meant to stay here long. She was meant to touch our lives and go back. Although sad it is also beautiful. She may be a breathtaking, heartbreaking, necessary, miracle. God doesn’t make mistakes. Trust and believe He has his reasons. He felt it needed to be this way to change the outcome of something. She may have been sent to save her sister Lily, Brian, or yourself. Her creation may be for the sole purpose of protecting you and yours from something far worse.

I told my daughter it was incredibly special to be able to see your angels in the flesh. Even if for a short time. Although it would be painful, don’t lose sight of the beauty and necessity of her job on earth. Also, it is very possible she will live a long healthy life as your daughter. It's possible in another year or two she will cause you to pull your hair out. Unfortunately, I feel this is the only time I brought something to the table worthwhile throughout this pregnancy. Boy it sure felt good in the moment.

4. The Last Months of Pregnancy

The closer the delivery date came, the more I realized I was screwed. It is in these times that I realized how unavailable I was. I was there if she needed to talk, don’t get me wrong. The problem was I controlled where the conversation went. Anything related to the actual condition itself was deflected. I had a hard time talking about it. I had a hard time wrapping my mind around it all. As the end drew near, the panic set in. I had literally no idea what was about to happen or how I was going to get through it.

I had effectively ignored the CDH aspect of the pregnancy and was clueless. I began to realize I was in real trouble in the ninth month. I began to realize I was going to be in the room when this child was born and she may not make it. I began to realize the pain I felt when watching my kids mourn my father. I knew I could very quickly be brought back in that type of scene. There is only one thing worse than grieving. It is watching your children grieve and being unable to take away their pain. I was worried about the safety of my daughter during this birth. The fragile condition of her mind and emotions and what would happen if it all went wrong. I had successfully procrastinated CDH to the very last moment and D Day was fast approaching. This is when I realized I was in big trouble. I thought to myself: You really outdid yourself this time Sherrie.

5. The Birth

The scheduled induction date came and terror set in. Luckily, my best friend Megz was in it for the long haul. Without her I was screwed. I realized the minute the baby was born that unprepared was an understatement. I came unglued. First, let me say I missed the birth by minutes. From the time it took me to get from the waiting room to the birthing room my newest granddaughter was born.

Basically, I was thrown right in and without warning. We had no idea the baby was coming that fast. As a matter of fact, the NICU nurse delivered the baby because the doctor didn’t make it. Making matters worse, my daughter had no epidural because there wasn’t time. I missed that too. I'm batting a thousand at this point. When I approached the door and saw all the lights in the room on I panicked. I thought she’s going to be so mad because I’m late.

When I opened the door what I saw took my breath away. There were around 15 to 20 people in this room. It was a wall of people. I said oh no is the baby coming? Brian's sister put her arm around me and held me. Quietly she said, she’s already here now be calm Sherrie. Thank God for her. She’s a Paramedic, so this is second nature to her. I stood in stunned silence and tried to get my bearings. I could see the baby’s legs but that was it. She wasn’t moving and she was blue. There were so many people. I wanted to run to my daughter and my granddaughter at the same time. I couldn’t. I was frozen and scared.I didn’t know what to do. I just knew I didn’t want to get in the way. I knew my daughter needed me but I didn’t know how to get to her. All of a sudden, through the crowd, I heard her calling me. That is all I needed. I ran straight to her side.

She said MOM I HAD THE BABY NATURALLY!!!! She was stunned. I put my hands on her face and kissed her tear streaked face all over. I cried and told her she was the best pusher ever! When I calmed her down I looked at the baby. She was still blue and not moving and again panic. I looked at my daughter and her husband and they were freakishly calm. They were not panicking. They were not worried. I was. I did the math and tried to figure out how long she had been like this and I started hyperventilating. I kept saying is she alright, is she breathing, is she alright. My daughter and her husband kept reassuring me this was expected and they have no answers for me.

They were so damn calm. I was so confused. I had to get out of there and quick. I ran back to the waiting room to tell Megz the baby was here and she could not leave me now. She wasn’t going anywhere. I couldn’t let her. I called my sister and had an emotional breakdown. The tears came finally. I couldn’t breathe. I was terrified. I didn’t know what to do. I could not look at my granddaughter in this state. I just couldn’t handle it. My sister and Megz calmed me down. They told me to forget about the baby and focus on my daughter because she needed me. They said don’t even look at the baby, just focus on Britt and be strong for her. This is what I did. I also continued asking over and over if the baby was going to make it. My daughter and son in law very calmly and gently told me we don’t know yet.

I looked at the kids. The peace and calm they exuded in one of the most stressful situations I’ve ever witnessed made me realize they had done their homework. They were prepared. They expected this. It all came back. All the times she tried to tell me this and I pushed it out of my head. Brian looked at me and calmly said we knew this was going to happen. We knew it would be like this and we knew it would look like this. Now all we can do is wait. We won’t have an answer soon. Maybe not even for weeks. This is exactly what was supposed to happen. This is when I realized the level of awe and respect I held for this husband and wife team was undefined. This is when I realized they knew what they were doing. This is when I realized instead of me being there for them. They were consoling me. It was a ridiculous switch-a-roo they pulled on me. I never saw it coming. It was humbling.

A Happy Ending?

We are hopeful and have faith. No clear answers yet. Brian and Britt are still pillars of strength. They have barely left the babies side. The baby is on ECMO, which was another breakdown for me. I had to stop looking at the live video. If I happen to look when they are doing stuff to the baby, I get scared. It looks like an emergency on live video. It terrifies me. At this point, my daughter just laughs at me a lot.

I think it’s interesting to share that when I finally got to see my granddaughter for the first time my sister caught it in a screenshot online. She just happened to login to check on the baby and I was whispering what a brave strong girl she is and how she’s got this. I was kissing her little head. In true Sherrie fashion I left the NICU and came down with TYPE A Influenza that night. Perfect. I am worried sick that I gave the baby the flu. Yes, that really happened...

This has been a journey as a grandmother, that has humbled me in ways I am unable to put into words. I know I've never been more proud of my daughter and her husband than I am in this moment. They are a shining example of strength and faith. Their children are blessed with the best of the best for parents. I would like to thank them both for their patience and kindness when dealing with me through all of this. I was supposed to help them. Not the other way around.

My granddaughter is stable but it could all change in an instant. Please pray for her continued recovery. If you would like to show support by donating a few dollars to my daughter and her family click here. Every dollar helps. If all you have are prayers, we appreciate those as much as money.

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