Congenital Diaphragmatic Hernia

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    Community Voices

    Fighting a Physical Illness Can Be a Mental Health Battle

    <p>Fighting a Physical Illness Can Be a <a href=" Health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="Mental Health" title="Mental Health" target="_blank">Mental Health</a> Battle</p>
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    Community Voices
    Sara Ward

    Experiencing PTSD as the Parent of a Medically-Complex Child

    Nothing can fully prepare you for the day you receive a medical diagnosis for your child. I still remember ours as if it were yesterday. I was sitting in a room, excited to see my baby on the ultrasound screen, while simultaneously creating a grocery list in my head and talking about dinner plans for that night with my husband. When the sonographer left the room to get the Medical Director of the SSM Health St. Louis Fetal Care Institute to come in and look at our scan, I felt a pang of fear. “There’s something wrong with your baby’s heart,” he gently said. Right then, our lives were forever changed. We received news that our baby has Tetralogy of Fallot, a series of congenital heart defects. I would continue to hear those words whispered in my ear at every appointment thereafter, always holding my breath bracing for more bad news. At 32 weeks into my pregnancy, we received more devastating news when they found an omphalocele and congenital diaphragmatic hernia. We were now facing not one, but three life-threatening conditions. For most parents, the thought of taking their child to the doctor brings to mind regular well visits and the occasional treatment for ear infections, rashes and stomach viruses. But after going through a medical trauma with their child, it is common for parents to feel anxiety when they visit a hospital or new specialist — which is one of the first signs of post-traumatic stress disorder (PTSD). After experiencing illness or trauma with their child, parents continually brace themselves for the unknown – wondering when they’ll experience the next hospital stay, the next set of bad news, or the next time they can finally breathe and relax. After my daughter was born, I only got to hold her for a few minutes before she was immediately transferred to the neonatal intensive care unit (NICU) at SSM Health Cardinal Glennon Children’s Hospital. A true fighter from the start, she only spent one week in the NICU. She had open heart surgery to repair her heart condition when she was 4 months old and just two months later, she underwent emergency surgery to repair her diaphragmatic hernia and omphalocele after experiencing some unexpected complications. The day of her emergency surgery, I was dressed for work, but wanted to make a quick stop by the pediatrician’s office to have them take a look at my daughter and calm some of those fears in the back of my mind. I fully expected that we would be given some antibiotics or be told just to keep monitoring her. But the next thing I knew, we were told to immediately take her to Cardinal Glennon for imaging. Before I knew it, we were being admitted for emergency surgery. The guilt seeped in and has never truly left. Why didn’t I have a bag packed? How could I not have had a doctor look at her sooner? How did I not know what was going on with my child? I should have known. I should have done something more. Guilt is also a common symptom of PTSD. Many parents feel guilt, hopelessness and shame over the things they did or didn’t do in an emergency. I’m still not quite over everything that happened with my daughter, and I may never be. The memories, fears, unexpected tears and worst-case scenarios all play out in my mind when I hear beeping noises from machines or unexpected cries from my daughter, or even as we’re waiting for the results of any new tests. Six weeks after her emergency surgery, I knew I needed help. It was the calm after the storm — that time when the adrenaline from surgery and recovery had worn off and I began to feel all the emotions I’d been putting off. I had an emotional outburst when she was crying one night — probably from teething or something equally “normal” — but my mind started racing to all the “what ifs” and orchestrating an emergency plan in my head if it came to that. The emotions and anxiety carried over to the next day where I couldn’t have a conversation with anyone about Lily without crying. I reached out to a counselor to work through some of these feelings and emotions. It was then that I heard that I was experiencing PTSD. I never thought I could experience PTSD because I wasn’t the one who physically went through the trauma. But I soon learned that a parent takes on the weight of the world when their child is fighting for their life, and that weight can get heavy on their shoulders. Studies have shown that PTSD has been reported in 21 to 23 percent of parents whose children have been in either the NICU or PICU, and mothers are more common to experience it than fathers. According to the Anxiety and Depression Association of America (ADAA), symptoms of PTSD include: • Overwhelming guilt or shame• Flashbacks• Nightmares• Severe distress when reminded of the trauma• Words, objects or situations acting as triggers to remind the person of the event• Disruptions in everyday routine• General memory problems• Hopelessness about future• Emotional numbing• Feeling detached from others• Avoiding certain places, events or objects that remind a person of the trauma• Challenges recalling important parts of the traumatic event• Avoiding thinking or talking about event• Trouble concentrating• Easily startled or frightened• Engaging in self-destructive behavior• Constantly tense or on edge• Irritability or anger• Trouble sleeping• Hearing or seeing things that aren’t there It is important to know the symptoms of PTSD, and that you should never hesitate to reach out for help. As a mother of a medically-complex child, I needed to learn to take care of myself so I can take care of my child.

    Maria Brislin

    What I Would Tell Myself on the Day My Baby Was Diagnosed

    This is what I would tell myself on the day my baby was diagnosed with a congenital diaphragmatic hernia (CDH): There is nothing — absolutely nothing — I can say to you today to ease your pain. Even if I could race back to you in a DeLorean, I know today you just have to be. You can only collapse there on the floor next to your bed, unconscious of anything but the tidal wave of brokenness and pain. It feels as if your whole world — as if you – – are shattered; because you are. The girl who woke up this morning is gone, and on some level you already know you will never see her again. The woman who cared a little too much about stroller reviews and nursery themes because she didn’t have any “real” problems is already a memory. You’ll have to grieve the loss of her, too. In the future, you will think of her fondly and smile — it’s not her fault she didn’t understand. And in fact, if you had your way, no one ever would. No — if I could go back in time, I’d meet up with you on day two or three. I’d find you after your desperate hours long phone conference with a surgeon you’ll never meet; after you cancelled the gender reveal party and purposely abandoned the pink and blue decorations in the trunk where they would remain hidden and unseen; and after you changed your spring-break “baby moon” to a road trip with consultations at three different children’s hospitals. The first three days you were in shock. Painful as those days may have been, you needed that time to process the fact that things are not always OK; life is often hard and unfair. And that ultimately — although the girl reading stroller reviews didn’t know it — she had no control over her child’s future and neither do you. You will emerge from the fog of those first brutal days and when your ever-larger pregnant belly prompts sweet old ladies to innocently ask if you want a boy or a girl, you’ll find that your old standby answer, “I don’t care as long as it’s healthy” is now the most brutal sucker punch of all. Even years later when you hear people ignorantly parrot that phrase, “I don’t care as long as it’s healthy,” you will catch your breath and look away. You’ll learn to tell the old ladies that you are happy to be having a boy. But what you really want to shout is: “I don’t care that he’s not healthy, as long as he lives.” You’ll repeat that mantra to yourself and know it’s true — you will accept illness and pain and heartbreak and disability — as long he lives. You will be amazed that your body can run out of tears. You’ll be even more amazed when — tormented by horrible things that your brilliant specialists specifically told you not to google — your mind finally sleeps. Although you fear that you can not live through this pain, your body will continue to march on. Just like when you drive a well-known route and reach your destination with no memory of having seen familiar landmarks, your body will automatically take you to work and back home again. Normalcy is an amazing healer. Eventually you will emerge from the fog and your mind will remind you to seek out cheese fries, bad reality TV, and cuddles from your chihuahuas. I could show you pictures and videos of the “happily ever after” at the end of all this. In fact, your closest friends will relentlessly tell you that it’s all going to be OK. While you appreciate their positivity, you’ll often wish that instead of reassurances they would just be willing to see your pain. What you want most is for people to say, “The worst may come, but if it does, I’m here, I’m ready, I’ve got you.” You and your husband promise each other you will find happiness on the other side of this. At best, you will have a lifetime to share with a beautiful baby boy. And if the worst happens, you will run away from the empty whale and sails-themed nursery. If the baby never comes home, you will book the next flight to Tahiti. When the NICU psychologist warns that 90 percent of NICU marriages fail, you ignore her and promise your husband that even if CDH takes your child, you will not allow it to take your marriage, too. I could tell you that you are strong — but I know that you’d much prefer the luxury of staying weak. Although there are so many things I’d want to say, none of my words could bridge the gap between you and me, or lessen the pain you will face. The only way to ease this pain is to walk through it. You will live through this, battered and bruised. Just like the Velveteen rabbit, you will emerge broken, but you will become “real.” So, perhaps the only thing I would tell you is we have never been to Tahiti.

    Maria Brislin

    Dear CDH Moms Who Have Cried in the Car Alone

    Dear CDH moms who have cried in the car alone: You are not alone. I know what it is like to fax the forms, and read the books (or skim them), and make the appointments and google. I know what it is like to sit in the meetings — and then as soon as that meeting is over you demand another one because the first time they didn’t hear you — or they may have heard but they didn’t listen. I know what it is like to send email after email after email and they ignore you because you’re “just” the mom, so you bring them research from experts with fancy degrees (even if you have a bunch of fancy degrees yourself, because even with fancy degrees you’re still “just” the mom). I know what it is like to talk to the pregnant CDH mom and tell her she can do this, too, she really can,  and you text her videos of your kid at swim class so she knows for sure that she can. I know what it is like to wait on hold forever. I know what it is like to have charts and nicely labeled three inch binders with 15 sections filled with 600 pages of documentation. I know what it is like to teach your kid that every super hero has a secret weakness, and he does, too, but that’s only because he’s like Superman and his weaknesses will teach him to be strong and you believe it yourself — but no child should have to be this strong. And you hope, and you pray, and then they deny your appeal again for the meds, or the therapy, or the device, or the reasonable accommodation, or the empathy — and they tell you how many other kids they have to worry about besides yours. So you lay wide awake at 2 a.m. thinking of what you can do differently next time. I know what it is like to send in the dad to meet because at least he’s not the mom. I know what it is like to have more specialist’s numbers in your phone than friends, because you may no longer have time for the friends — your new squad is the specialist that is willing to take the 2 p.m. peer to peer review from the golf course. And there’s no time for book clubs when you’re reading medical journals. I know what it is like to agree to be in the next scientific research study. While you wait you spend all the money. And when you have spent all the money you pull out the Amex and don’t even flinch because even if they deny you a thousand times, you can’t deny your child. I know what it is like to call the specialist with the 11 month wait and the one with the 14 month wait and you book both specialists, in case at the 11 month mark your kid is too sick to go and you can’t afford to reschedule and wait another 11 months. And you get the letter from the pediatrician, but no one respects a letter from a pediatrician who is not a specialist. I know what it is like to dry your tears and get out of the car and hug your kid, who despite it all, seems to be always happy, and you go home and play UNO and fight with lightsabers, because all real warriors fight with lightsabers and you’ve been fighting a war since you were 20 weeks pregnant and you are tired — but lightsabers are fun, so you fight on. #CDHFamily #NICUGradsAreTheCutest #CDHAwarenessMonth

    Cassie Fannin

    Receiving Our Child's Diagnosis of Congenital Diaphragmatic Hernia

    At 19 weeks pregnant, we went in to our anatomy scan excited to find out if we were having a boy or a girl. We found out but were also devastated with the news that our unborn daughter had a congenital diaphragmatic hernia (CDH). Our doctor told us there was a strong chance she would not live. He said they would run every test they could and then we would need to make our decision on how to move forward. We felt cheated, we felt like we were being punished, we felt angry. For weeks I felt like I was living someone else’s life. For a long time I resented people in my life with healthy children. I resented people’s “little” problems. I felt sad, and at times, I felt truly hateful. But sometimes, after you picked up the broken pieces of your heart, you’re left with a better one. Summer has made me a better person, a more patient person and a better wife and mother. People ask us how we do it, if we’re exhausted being new parents and if there are days we want to rip our hair out. Maybe, but mostly no. We’re happy. We’re happy every day. She has brought to life what is truly important. Our house is not always clean and organized. Our schedules are sometimes a mess. No my hair isn’t washed and curled, and yes, this is yesterday’s makeup. But my heart? My heart is full and calm. I can look at other families and truly be happy for them and their healthy children. I see that every problem in people’s lives are huge to them and hope they can find peace within them. Despite Summer’s challenges, she is completely perfect and amazing. Her easygoing disposition puts a smile on my face every day. Her happy smile lights up the room and can melt the coldest heart. She is pure joy despite her seemingly endless fight. Through hospital stays, clinic visits, therapy sessions and countless procedures, she perseveres and teaches us all how much we are capable of overcoming. I can’t imagine our life without her in it. Some days she can’t stop gagging, coughing and throwing up, and my heart skips a beat with panic. But some days she can’t stop smiling and giggling, and my heart skips a beat with happiness. Our life is about finding balance and appreciating every single day. Families receive life-changing diagnoses every day. Today I’m asking you to take a moment to think about them. Think about the dad who just found out he will have to bury his baby. Think about the mother of three who just found out her own mother is on her last option. Think about the person who is all alone fighting against cancer. Say a prayer, light a candle, send your juju into the universe. There’s someone who might need it right this moment. I still don’t know why this happened to us. We are just like you. We thought this kind of thing happened to other people and would never happen to us. But then it did. I learned lessons I never thought I would, and I learned lessons I really didn’t think I needed to learn. What I do know, though, is life can be messy for everyone. No one has it together all the time. Define what is important in your life and adjust your expectations. Be happy every single day.