Before, you read her story, let me focus on an update on mine. Jedediah would have been a year old in 5 days. 5 days! It is hard to believe and I still think about him every day. Even though I have my precious baby boy Cayden, I still wonder what Jedediah would have been like. Would he have been anything like Cayden? I still long for him and wish I could have held him in my arms and loved him like I love Cayden. Adam told me the other night that things happen for a reason, that we lost Jedediah to get Cayden. Cayden is a Momma’s boy and I am loving every single second of it!
I finally got my insurance to get in the doctor at around 15 weeks pregnant. I went in, peed in their cup and all that good stuff. Well its time to go get an ultrasound, it was my first appointment but I was already 15 weeks pregnant. The lady doing the ultrasound and hardly said a word to us.. I finally spoke up and asked if everything was okay? She quietly looks and me and my boyfriend of 5 years and says “No, something is wrong. The stomach is in the chest. I believe the baby has Congenital Diaphragmatic Hernia” I honestly didn’t understand the words that came out of her mouth, these big medical terms. What did this mean? Was it life threatening? She then tells us that she’s going to get the doctor to confirm the diagnoses. When she walked out I jumped off the table and told Johnny to type what I spell.
In the nick of time we got the words typed in his phone as the doctor approaches the screen and starts analyzing what he sees on the screen. He tells me my baby GIRL has a condition, Congenital Diaphragmatic Hernia, and that it is life threatening. They sent me and Johnny to a room where I bawled. Why! No! They come in and tell us they are giving us 3 days to collect ourselves on the devastating news we were just given and we’ll come back to speak with a genetics counselor to learn what CDH is and the concerns. On that day with the genetics counselor kept on and on and on and on about getting an abortion. That was not even an option, NO NO NO! I will NOT kill my baby just because she isn’t “medically perfect” they wanted to do chromosome abnormality test and I refused the testing. I didn’t want to know. This was my baby no matter what is wrong, I don’t wanna know anything else!
First let me explain what CDH (Congenital Diaphragmatic Hernia) is and how its life threatening. CDH is as common as cystic fibrosis, but yet CDH is very unknown. There is a 1% chance of CDH occurring in pregnancies. The survival rate is 50/50. Unless you’ve been affected or know someone who has been affected, chances are you’ve never heard of CDH. CDH is when there is a hole in the diaphragm muscle which allows your stomach, liver, & intestines to go into the chest cavity. Then that forces the heart to be shifted and the lungs have very little limited space to form. A full term CDH baby has the lungs of a healthy 20 week baby being born. They just simply do not have much lung tissue. Leaving them unable to breathe on their own when they are born. All CDH babies are different, the worsts can make it and the best lungs don’t.. its crazy really. A lot of CDH babies do end up needing ECMO which is a heart and lung bypass machine. It basically puts oxygen into the body through the blood.
Well here in Knoxville they do not have ECMO capabilities. I stayed in Knoxville for a while continued my appointments here up until 34 weeks. At every appointment I had an ultrasound to check her lung growth as well as amniotic fluid. CDH causes the baby to not be able to swallow so needless to say I got HUGE. I did meet with a surgeon that had done CDH repairs and I wish I was exaggerating but this doctor had no hope for my child. She pretty much knew my baby would not make it. I was offended though, I know she’s a doctor but I needed a little more faith than what she had to say. I was not pleased with this doctor being my baby girl’s caretaker in the medical field, honestly I refused! Around 25 weeks I found out more news, she has a heart defect. But after seeing the heart specialist, he told me exactly “she does have a heart defect called a VSD, ventricular septum defect. But this is not life threatening and the least of your worries with the CDH.” *sighs*
I decided I don’t want to chance having her in Knoxville in a non-ECMO capable town. That if she needs ECMO they will transport her in helicopter to Vanderbilt in Nashville, TN and I can go after I’m released in 2 days after having her. Ha! No, I couldn’t and wouldn’t separate from my baby and solve that and just go ahead to Nashville before she comes and have her there. I got help and got fixed up with a place that supplies a house for people in town for loved ones receiving medical attention at Vanderbilt or for me, supply a Hotel room with small kitchen for people with kids under 6. I went to Nashville with my son and a friend of mine. My boyfriend drove up from Knoxville on the weekends. I had no car, I rode the shuttle to appointments. I was alone, I needed him. He was my back bone through my pregnancy. I did way to much reading on the internet. I followed stories of CDH babies, some lived, some didn’t. I cried every night. I was so scared, I feared losing her.
But I mainly tried to shove that in the back of my mind. I had to keep on to faith more than anything. I had to BELIEVE. I was scheduled to be induced on May 13th of 2012. This was Mother’s Day, I took this as a good sign! Yes! Mother’s Day, this has to be a great sign! I went in at 8 pm that night to be induced. My boyfriend was here, my friend, and my cousin and Mom drove up for her birth. Its time! I was so scared, blank, frozen, worried, excited, all kinds of emotions. I get my epidural when it finally came time, 10 centimeters and ready to push. But because of the CDH and the lungs I had to labor down all while feeling every single bit! My epidural only numbed me from the start of my legs down, not the hoo-ha.. where I needed it! So after screaming and crying in fear and pain… after my nurse going off on a few people because of me in pain like I was, got a second epidural. The second one was a charm, here she comes! She came into the world at 1:49 p.m. kicking, but hardly screaming. She didn’t have lungs to scream, BUT I did hear a little cry. I thought that was a good sign too!
As soon as she popped out they took her to her bed and quickly incubated her. They brought her to my side and let me see her for a split moment… then rushed her off to the NICU. I made it to my room after an hour or so. I did nothing but stare out of my window and cry. I felt so empty, my baby was here and fighting for her life. I waited what seemed like years, when I received a call needing my permission to place her on ECMO. My heart split in half for the millionth time. I didn’t want her to be on ECMO, she was worse than I wanted to see. Finally after 5-6 hours I FINALLY got the call that she was stable, successfully on ECMO, & I was free to visit now.
I got wheel chaired by the longest hallway to the children’s hospital next door as I feared seeing my little innocent baby hooked to all kinds of machines, how would I keep it together? I finally approached her room and honestly I didn’t see anything but her, her and the BEAUTIFUL LONG BLACK HAIR. There she is.. my baby.. IVs, ECMO lines coming out of her neck, all kinds of machines, overwhelming. But she was so beautiful. She was me made over! I spent so much time with her, when my boyfriend was gone I rode the shuttle staying from 10 am to 8pm everyday! I stayed by her side constantly. I had great moments with her, holding her hand, stroking her face, holding her foot. I got to see my baby open her eyes, TWICE… she was always heavily sedated because of ECMO.
She needed to have her surgery to move the organs back down and patch the diaphragm. Now just because that surgery is done doesn’t mean it’s over. No, it is just beginning after their surgery. Pulmonary Hypertension, that’s what gets the babies with CDH, that’s what kills them. She never got her surgery because she had a blood infection. She couldn’t go under the knife with that, it needed to be taken care of. Her heart defect cleared up, the holes, the vsd, were little to none size now. The rules of the NICU is “no news, is good news.”
On day 12 of her life, I woke up too 2 missed calls from the NICU. As I listened to the voice mails stating that I call them immediately… my heart sunk, luckily my boyfriend was in town, I smacked him to wake him up and rushed out of the hotel room with the NICU ringing on the line. We get in the elevator and I heard “you need to bring the family in, there’s nothing we can do” I screamed and collapsed in the elevator, I know the person in there with us didn’t have a clue.. The door opened as I sobbed and people stared. I looked at Johnny as I hung up and screamed she’s dying, we have to let her go! She had developed a brain bleed from the blood thinner needed to be on ECMO. Forcing to remove her from ECMO, before she was ready. I called my grandmother, she made it to Nashville in record time. I didn’t make any decisions until she arrived. They let my son meet her, he was too young to be allowed to visit.
We were given the option to give her a bath and clothes or just go ahead with clamping of the ECMO. I went back to the hotel grabbed an outfit, and bath time things. I arrived back at the hospital and gave my baby her 1st and only bath I ever got to give her. We got her in her outfit and had the Chaplin come and pray for her precious soul. They sent a photographer that takes professional pictures for free to people loosing their child. After the pictures we done, it was time. They led us to the quiet room, it was next to her room, and told us that they would cut of the ECMO then bring us back in. I could either let her die alone on the little bed or I could hold her as she passed. I chose to hold her, let her go out in her Mother’s arms.
She didn’t pass! Her oxygen stat was sticking at 92-96. My baby! She wasn’t giving up, she was still alive even 4 hours later! The doctors were confused, how come she was still doing so good on her stats? They told me that my next option was to pull out the ventilation tube or get a cat scan and see how much brain bleed damage there was.. maybe they could do surgery to release some pressure off the brain and drain the fluid filling her brain. But was warned, if she was eligible for the surgery she would be severely mentally and psychically challenged. I knew I would still love her either way, she was still my baby. Nothing changed that. So she went for her cat scan and after the results I was told they couldn’t do anything. She was bleeding from multiple areas in her brain. The surgery couldn’t be done because of that.. so that was the end.
I could let nature take its course as she would slowly die or remove the ventilator tube. I chose to take her off, I didn’t want to make her suffer anymore. I couldn’t, she fought hard enough. I let her daddy hold her for a while. Then after a lot of convincing done to me I finally let my Mom hold her for a moment. (It wasn’t good for her to be moved much) then it was my time, I held her for a while then I said the words… the words that haunt me still today. I had to give the okay, the okay now you can take my baby off life support and watch her die. No words any mother should have to live with. I held my hand over her heart and sobbed like a baby as they turned of the machines beeping like crazy because she was dying. Her heart rate descended until there wasn’t one anymore. She passed away at 13 days old at 12:13 am. They took her from me and removed all IVs and tubes.. and I was able to come back in and hold her as long as I pleased.
I held that lifeless cold beautiful baby girl in my arms. I tried so hard to keep her warm, but I couldn’t. She was so cold, my baby was dead? I felt like I failed as a mother, still do. I hate myself for giving up on her, having to let her go, I can’t help but wonder what if? I never would’ve dreamed that’s how it ended. I didn’t think I could lose her. I just never thought that. Pregnancy and Infant loss is real, and it can affect anyone! If you are affected with CDH I want to tell you that there’s a group called CHERUBS and Breath of Hope. These organizations help you more than you know. If it wasn’t for them, I would’ve been alone in my journey. Please reach out to them. I hope I didn’t ramble, but I’m glad to be able to tell my story.