After three miscarriages, we were having our little rainbow baby, Luca, and he had CDH.

Our baby boy Luca was born Friday, June 18th at 37 weeks + 2 days. He had right-sided CDH with liver up, and less than 1 LHR. His prenatal ultrasounds and MRIs were always good, his heart was strong and I had no complications during pregnancy except a short cervix and scheduled c section due to a prior myomectomy. We had been preparing since we got the diagnosis, on week 17. We had gone to CHOP, prepared our relocation to Philly, I took an early leave to just focus on Luca and prepare him for the battle he'd had to give against CDH. It was a magical pregnancy, I sang to him, meditated, did yoga, played the ukulele, read to him and talked to him since I felt his first kick. We had hope and faith that he'd survive and thrive.

Luca arrived on the day we had chosen, and immediately the doctors and nurses fell in love with him, he was beautiful. He was put on oscillator first, and that night they came up to my room to tell us he needed ECMO, the first fear came true. He was "critically stable" the nurse practitioner told us, and that's the term we'd hear for the next days. Luca was tracking stable on ECMO, until the second fear became real, they found a bleed in his head ultrasound, two days later they saw a second one. He needed a CT scan to confirm the severity, we felt alive after the results came out saying it wasn't in the brain, but in a constricted ventricule. After speaking to the neurologist he said the damages wouldn't be fatal, we'd look at potentially ADHD. We were happy to hear that, we'll take ADHD ten times.

Then things just went downhill from there, his tummy got swollen one night and they needed to do an urgent exploratory operation to see where the perforation was. After a successful surgery, the doctor found it was a pneumothorax, his stomach was safe and perfect, and the doctor told us she had even seen his right lung, I cried the biggest tears of happiness. She said she would have done the repair if Luca didn't have the infection. So close. We thought this was the last and worse hurdle our little Luca had to go through, but it wasn't.

The morning after his surgery, we knew things weren't right. The doctors came by saying they wanted to do another head ultrasound, 3-4 hours after the last one, and then we'd meet at noon. We knew then and there that meeting wasn't going to be good. The team of doctors were waiting for us in a conference room, and they gave us the news. Luca's bleed had extended a lot, now it wasn't only about how he'd survive but if he'd survive. My world crumbled as I heard and felt my heart break.

We held our perfect baby for hours, saying good bye before they disconnected him from ECMO. I sang his songs, I smelled him, kissed him. He was perfect. I held Luca after they disconnected him, I wanted him to be safe in my loving arms as he left this world. He'd already spent too much time alone in that NICU bed, he deserved to be in my arms, skin to skin as he passed. I held him for a while, until his heart stopped. Our little Luca was two weeks old.

We did everything perfect, we went above and beyond for our baby boy, Luca didn't even get swollen while on ECMO, his vitals were always good, yet, CDH gave him all the things we were warned about, and took him away. I find myself reading the letter to grieving parents over and over again to convince myself that there was nothing we didn't do for him, and that CDH doesn't play by the rules.

His story and purpose will live on, this is Luca's story:

--
So grand and so perfect. Many need years, Luca transformed our lives in a short time.

Our perfect baby escaped from a cloud where all the babies that couldn’t continue lived. He was a naughty baby that said “I want to see my parents for a little while”, because he saw the love we had for him when we decided to continue the pregnancy, despite everything.

And we saw each other for the first time. He probably thought “Good escape Luca, you did it, you saw mama and papa”. He probably also thought “Sorry mama, I’ll make you suffer when I leave, but you’ll forgive me because I only wanted to see you both”.

“I only came down from my cloud to show you that you are the best parents. That lady with hair like rays of sunlight will be my mama and I want her to believe it when she sees me”.

It was him who decided it to be this way. He didn’t stay behind, he went even further. The biggest act of love, a magical mischief like a character from Disney (that’s what mothers do right? Forgive their children’s mischief).

We can cry because Luca is gone, but we can smile because we met him. We can close our eyes and pray for his return, but we will open them to see the love he left us. Our hearts feel empty because we think of him but at the same time our hearts never felt so full of love by his presence, all the faith in his fight and existence.

You did it well my precious, you did amazing Luca. You overflowed with love the hearts of all the family, united we surrendered to the most beautiful love, the most beautiful eyes.

When we were asked if we wanted to meet the perfect love we said yes, and we weren’t wrong, your mission was grand. The smallest of the family will be remembered as the greatest.

Luca, you will always be LOVE,
you will always be LIFE,
you will always be HOPE,
and you will always be LIGHT.

Hello All,
I just wanted to say that I am so very proud of my cherub who will be graduating college in one month! She was not expected to live her ordeal with CDH, or to be able to get through school reasonably. She has proved in many ways she is a fighter!
It has been 4 long years in college, and her trying to hold an awareness event for CDH. Her moment has finally come. With a lot of hard work and determination, she will be doing a test run of an awareness to CDH tomorrow where she will be lighting up the Elliot Tower at her college along with an informational table. The full event will be held on April 19th. Please wish her luck! She is so proud of herself and wants to do this special event for the entire CDH family!

Hi, I'll go ahead and welcome myself back here. I'm Tasha. I'm a 32 year old who has spent the last 3.5 years doing the dirty mental health self-care that no person wants to face. I am divorced now and co-parent a 12 year old son, Dante. I know that I am very privileged to be his mother. I wish I could lie and say I have strong memories of anything I've said or done relating to my life-changing experience with CDH, but I cannot. I am forever grateful for the Welcome Packet I was sent when I was pregnant. Back then, I donated what I honestly thought was a big package of tissues, hand sanitizer, cameras, handprint kits, etc. Hindsight is 20/20 and I guess my mathematical comprehension has improved, bc it wasn't nearly enough to supply the people who are facing CDH. However, I wasn't working, I was in a toxic relationship and I was young and naive. I tried my best.

I digress, I came here for Luna. To share my experience as a weathered loss-mom and, boy, did I age like cheese or what? Not fine-cheese, more like the bag of Kraft shredded mozzarella that you accidentally left slightly opened, it then got shoved to the back and forgotten and is now a science experiment and stinky.

The loss of my daughter is the single worst thing that I've ever experienced in my life. Not to brag (BIG JOKE BUD) I am an adult survivor of child abuse and neglect. I thought I'd felt pain, but nothing cuts quite so deep as losing her.

Today, my daughter should be 7 years old. She should have long black hair and a fire-cracker attitude to-boot. I'd love to see the small human she would have become. A few months ago, I went to visit her grave... That never gets easier for me, btw, every single visit brings back a flood of emotions and I then have to recover. Anyway, as I was walking back to my vehicle, something new happened, that tightness in my chest metaphorically ripped open and idk how exactly to explain it, I'll try. I felt like I had forgotten something behind me and when I turned around, reality hit and it was her. When I'm at the cemetery, I focus on her, it's like I'm wearing blinders. But that realization that I was leaving her there almost killed me, I'm so serious. I dropped to my knees, alone in the dead of night night screamed and cried until there were no tears and my voice had escaped me. I've been on this journey now for so long, but let me tell you, that moment was one of the hardest I've had.

Luna had a Bilateral CDH, most of her abdominals were in the thoracic. She lived only 6 hours.

Back to the present, I sat in my car for over an hour today, unapologetically bawling my eyes out. Screaming into the void, praying for an answer that has never been given. I did my motherly duty and cleaned the bird crap off of and out of the etching on her headstone. Idk why but there were odd spots of random yellow paint that I had to scrape off. Long worn adhesive from command strips and various glues. At my cemetery, all items must be fixed to the headstone or they will be disposed of. I started my task of wrapping floral wire around the CDH colored flowers I'd picked for this year's bday theme. Of course, it was Easter, so many people were coming in and out to visit their lost loved ones. An nice elderly woman walked up quietly behind me and I felt her presence but was comforted to not feel so alone. Like my burden was shared bc she was here and possibly understood grief. She quietly said, "that looks tedious, but beautiful. Like I'm sure she was. Happy Easter, I'll be praying for you. What a lovely name.". Just like that, I thanked her and exchanged an understanding glance and got back to work.

I'd been there at least 3 hours at this point. Leaving twice for coffee and to allow a white SUV to do what they needed to do. It had come and gone 6 or 7 times that day. I thought maybe my absence would provide them some privacy. Mind you, I have a large craft bag, a big fuzzy blanket, hand sanitizer, trash bag, coffee, tea, supplies and it is scattered around but neatly on her grave. So, after I'd cleaned up, gotten coffee, taken a potty break, I returned and setup and started at my work station again. The same car pulled up and I heard a commotion. I turned around just to make sure no one was coming toward me and saw a woman in her mid to late 40's stumbling out of the passenger side with the BIGGEST and most beautiful grave topper I'd seen before. It was full of many different blue flowers and a ribbon. I didn't want to stare, it was a brief glance, and I went back to what I was doing. I'm getting to my point, I promise. I heard her speaking to someone and it was frantic. Her voice got steadily louder but the other voice, an older man, stayed the same octave. I guessed they were making their way to the graveside of their lost loved one. I didn't flinch when I realized what was happening. Like fr, I am covered with goosebumps writing this. I heard the most primal cry of grief I've ever heard. There were maybe 5 other families scattered through the cemetery at the time. I cannot guarantee it but I bet not a one looked her way, we all know that feeling. It was raw, it was powerful, it was heartbreaking. I'd been calm, cool and collected for the last 30 mins or so and I tried to stay in the moment, but I broke down. My tears were silent but only because I forced it down so as not to disturb the woman. Idk if what I did later was right or wrong, but when the cemetery emptied, I went to look. *omg I'm crying again now* that had to have been his mother. He'd only been buried a week and he was 23 years old. I got 9 months of pregnancy and 6 hours of life with my daughter. This woman had lost her son in his prime.

I just finished up arranging the flowers when my exMIL pulled up. She went for a hug but I'm self-isolating so she just told me it was beautiful and Happy Easter. I was hot, sweaty & sunburnt. I walked to my car and sat down, they had accidentally blocked me in. I just waited.

Then I drove myself home, I passed my cousins house, there were 14 cars but I'm self-isolating so I just honked and they lined up and waved.

I got home, taught my 3 year old niece how to spell and read the word poop (it's a joke and I'm too tired to explain). We traced nighttime shadows with chalk, ate cake, sang Disney songs and played with our exercise ball. Then I went inside, made a Facebook post about Luna, started a fundraiser for CDHI on Instagram & then logged back in.

I know that's a long read but I just had to put it somewhere.

Hello,
I am 28years old. My CDH Survivor will be 8 on August 2nd. My story started at 19 years old pregnant with my first child. A few months later i turned 20. When I was 30 weeks pregnant i went in to have a 3D/4D ultrasound and immediately i noticed something wasn’t right. The tech would not speak and she kept going over the same spot. Though at the time i had no medical background i knew something was wrong. Next thing i knew i was having a dr appointment and it was confirmed my son had a herniated diaphragm on the left side. We were referred to UCSF specialists and had xrays done. They told me in our initial meeting a mixture of things. It felt like i was being reassured but not at the same time. I remember not knowing how to feel. So i finally asked, “so what does that mean? What are his chances of making it?” And they said 50/50 chance i said so is it a good 50 or a bad 50? And they said they didn’t know either way that they wouldn’t know anything til he was born. I asked what my other options were...they said abortion...i said well I’m not going to take his only chance and I’ve come this far. At birth he was taken from me immediately and intubated. I didn’t get to see him for hours. When i finally saw him he had so many tubes and things it was scary. He wasn’t allowed to eat on IV nutrition. He had surgery shortly after birth and our first sign of hope was given. His repair was small enough to use his own stomach muscle. I was relieved but still worried sick. I stayed up day and night for weeks until we could finally go home. The first time i held him i cried tears of joy and tears of sadness i could not believe something so horrible would happen to something so precious. Shortly after he was put an NG tube and we worked day and night on getting him to tolerate food but his weight just wouldn’t stay up. He would vomit after every feeding and he would get too tired to finish a bottle. One day Finally we were on track to go home. During his hospital stay we lived in hospital waiting rooms at the bedside and in closets with beds they provided us hours away from home. We had no family there. Occasionally someone would come up and visit but it was sooo hard. We finally went home and life continued to be hard. I felt like a failure, every meal he would vomit, then there was severe constipation from his diet. It was like the nightmare had never ended. Gradually things got better over time. His vomiting stopped. But getting him to eat was frustrating and at times i felt like the worst mother. No one understood what we were going through everyone just thought i was a bad mom who didn’t feed her child. The day he told me he was hungry for the first time i will never forget and i remember i was so happy i cried. And i asked him what he wanted. I told him you can have whatever you want and I’ll make it. Up until last year i thought we were done...life finally felt normal he was eating not great but okay compared to the past....then the worst hit us. We had a follow up and his weight was less than acceptable. Meal supplementing started again and i cried. I cried for weeks because the thought of him having to have a tube again was just not feasible. This child had struggled with his own self image for as long as i could remember because of his scar. He would never let people see his stomach. He was absolutely embarrassed by it and he had just gotten comfortable with the scar from his surgery. Over the next six months were rough we worked hard at eating and weight gain. When we saw the specialist again he was just where he needed to be (bare minimum) to not worry. We went back to yearly visits and when i say the nightmare is never truly over it really isn’t.

Happy CDH Cherub Day to my special hero and all cherubs!💖

This will be the very first post I do here. My son was born with sever RCDH. He was born with hardly any lung tissue. He was placed on ECMO for two weeks. It was the most horrible thing that i had to see my only child go through right after birth. He had his repair surgery while one ECMO and every thing came out good. During his stay at the hospital he was having his good days and extremely bad days. Every day it would be a different thing. Unfortunately do to his sever RCDH he developed Pulmonary Hypertension. He was on the hospital for 6 months of his life. Due to PH he had to be put on paralytics to see if he would get better. Unfortunately September 24th, 2018 my son passed away. He was such a strong, loving, happy and just beautiful baby boy ever. We Love and Miss You So Much My Sweet Baby Boy

Hi. First time here. I am 22 weeks and 5 days. And I just found out that my son has CDH. It's my first child. I am a little scared. 😯😕

So its been a while since ive gotten on here. I lost a daughter at 26 weeks. (Stillborn) but im happy to say i had a son on 7-6-2018 he also has had cdh. We were lucky he was born at 29 weeks had his first surgery at 3 days old. Happy to say we are finally out of the NICU!!! Side note i also had cdh when i was a baby!

Hi all,

We recently found out at the 20 week ultrasound that we are expecting a boy with CDH. This is our second child and our first boy is healthy. It has been a very hard time as I am a neonatologist and have taken care of infants with this difference and seen good and bad outcomes. I started a blog and am really looking for other parents for support as well.

Left sided, edge of liver up, LHR 1.3-1.4. Will be delivering at UCSF. Due date 8/20/18.

stinastillwell.blogspot.com

Kristina

Me and my wife were expecting our second child. We were very excited since we have a 5 year old daughter that has been begging us for a sibling. We had a gender reveal party with family and friends. I cut into the cake and whem i saw the blue feeling I was overcome with joy and the room bursted out into celebration it was one of the most memorable days in my entire life I was going to have a son. 3 months into pregnancy we went for a 3d ultra sound where we discovered our son was diagnosed with CDH we were devastated and knew absolutely nothing about CDH. Me and my wife cried all the way home we immediately began doing research to educate ourselves as parents. We live in Ansonia,CT and the nearest hospital (griffin hospital) was not capable of delivering a baby with CDH the nearest hospital was Yale new haven hospital about 13 minutes away. They had just renovated the entire NNICU floor and had an ECMO program. Yale has come along way and we were impressed with the success the hospital had with previous CDH cases so the choice was clear. The day finally came on 3/26/18 Alexis Reynaldo Sanchez (AJ for short which stands for alexis jr.) Was born 6lb 1oz via C-Section. I held my wifes hand he was pulled out and all i saw was the back of his head as within second he was rsuhed into another room i did not hear him cry or make a single sound. 5 hours later we were finally able to visit him he was hooked up to all these machines. Nurses and doctors coming in and out of the room. All i wanted to do was hold him but that was not possible. We stood by his side just staring at him hoping to get a glimpse of his eyes. We spent about 3 hours with him then went back downstairs to our room. The morning one of the doctors came down to speak with us and informed us that our son was not doing well on the ventilator and the only option was to place him on ECMO we were devestated my father and mother in law were in the room when doctor broke the news and there was not a dry eye in the entire room. He was succesfully placed on ECMO that night and was stable but critical days went past and his status was up and down. Aftee 2 weeks on ECMO he was doing well enough to have surgery done to repair the left sided CDH he had complications with bleeding dueing surgery and had to be taken off the ECMO. He was in very critical condition and docs were very concerned we were absolutely devestated but our lil fighter pulled thru we are almost at a month later he is still on the ventilator but his chest xrays done yesterday looked good and docs are saying he is on the right path. AJ was looking very good and was doing well unfortunately he started to experience severe hypertension and his health declined very rapidly today is 4/26 and AJ is a month old today and docs just gave us the news that they have tried everything possible but they just dont see him making it past the weekend. Me and my wife kiara are devestated and are trying to accept the fact that our son may be getting tired and possibly gaining his wings I love my first born son so much and i know he fought as hard as he could and continues to fight. Please keep him and us in your prayers.

Hello my name is Chelsie, I have a daughter that was born with a left side CDH on December 19th 2017. The day she was born I will never forgot I never knew I could love someone so much, when she was born they noticed she was breathing hard. They rushed her to the nursery to put her under the oxygen tent, at just 12 hours old I get told my daughter has a CDH, this being my first child and not knowing exactly what it was of course my husband and I break out in tears. Then after her pediatrician explains to us what it is we get told she will be getting sent to UAB Children's Hospital, they let us say bye to her before the left with her. That will be a sight I will never get out of my head seeing my child in a transfer box with all these wires hooked up to her. I get discharged right away so we can be up there with her. we arrival at UAB still not knowing how bad her case it and not knowing when surgery will be, she was stable but she was on the ventilator.

After a could days passed of us being there we finally get told her surgery will be on December 28th. Surgery went great come to find out she had a mild case, we thanked god for that. Everything started to get better from there she was just moving forward, soon the ventilator came out we got to finally hold her, she started eating from a bottle. After just being there 3 weeks we get told she is ready to leave and go home, I cried tears of joy that my baby girl would fianlly be coming home. We have been home since January 10th 2018, she is doing great healthy as she can be. We have had serveal check ups since being home and still more to come but she is doing great growing like she is suppose to. We thank the good lord everyday for letting our baby girl be here with us, shes our little miracle baby! I'm so blessed to be her mommy, I love her more then anything else in this world.

Colton was born right side hernia. At 5 days did a repair. Then at 6 months they added a patch. As his body grows the patch will not. He has heart burn pretty bad.

This past year I have had 2 different x-rays done because of concern. First one he was having sharp stabbing pain. X-ray looked good. We followed up with the Surgeon. He said he has no reason at this time to have any concern. He can not do explorative surgery. He needs more reason for a surgery. Like puking green bile, no pooping, fever and breathing issues. So its a waiting game at this point.

Then 2 days ago he started complaining his stomach is hurting and feels like he needs to puke but has not. Zantac is not helping. So I called the Dr. and he ordered an X-ray which looked good. Dr said he sounds good. Just thinking he has a touch of the stomach flu. I don't like the waiting game. At this point I don't even want to let him out of my sight. But the Dr assures me he can go to school. (which they are aware of everything). And I have to go to work. Has anyone else gone through this?

Hi,
Our son was diagnosed at 20 week US w/ LCDH. I had amnio done and array came back negative.
We also had extensive genetic testing prior to becoming pregnant (and have 2 beautiful healthy sons).
And, I also had the DNA blood test done at 12 weeks, again, all negative.

We realize there aren't tests for some of the syndromes, but, we are really worried. They ultrasounds I get each week al seem to indicate something different. One said no globes present, one said hypotelorism, one said only one globe present. globes lack sonolucency, lenses are seen but appear displaced superiorly.

Has anyone else come with these issues? We had one ultrasound that had a 3d picture that looked like the left eye was totally not there, and you could see an indent. Then we had 4 D pictures done (we paid to go to a place that does this, but isn't the doctor) and it looked much more normal.

Mostly, in the pictures it looks like the baby is squinting. We are being told we have to wait til the baby is born but I would like to be prepared to be looking for other issues, not just the CDH.

Thanks for responding,
Katharine

I'm hoping there is someone that has dealt with what we are currently going through.

Our Aiden is 3 months old yesterday. By the Grace of God we came home from the hospital almost a month ago. We are A LONG way away from the 30% chance of survival we were given prior to birth... however, who knew surgery and the NICU would be the easy part!

Aiden is a Left Sided CDH survivor- his stomach, spleen, intestines and part of his liver herniated in to his chest.

I initially was breast feeding-- pumping and feeding with a bottle so that I could track how much he was taking in. He was always extremely gassy with my breast milk no matter what diet changes I made. Once we game home my milk dried up-- too much stress, not enough water or eating despite how much I tried. We then started supplementing half formula and have BM. At this point we have been on 2 different basic formulas, Nutramigen, and are currently trying Elecare. He appears to be in excruiating pain after eating, very gassy and at times won't even take a bottle because after a few drinks he stiffens up and cries out in pain.

We have had a normal upper GI study as well as a lower GI study. Structurally they cannot find anything wrong. At this point his surgeon said he believes it is a digestion issue and we just have to keep trying formulas until we find a fit..... this Momma CANNOT handle many more weeks of seeing him like this. In the last 7 days he's only had formula 3.. the rest he was on plain pedialyte.

Is there anyone that has had something similar to this?? What did you do? Im willing to try anything at this point!

Thank you for any input

Hello-

I am a right-sided CDH survivor. My husband and I are attempting to start a family. This past December we had a miscarriage. We have had many doctors tell us we will be a high risk pregnancy with my health. I would love some advice or experiences if anyone would be willing to share as we are scared!

My doctors told me they think I will be in a lot of pain and discomfort the last 6 weeks of my pregnancy if I can get pregnant with all the scar tissue stretching with the baby. Anyone have any issues when carrying as a fellow CDH survivor?

Thank you.
Renee