This is shared with permission from it’s original source, which you are invited to visit: Scarlett Grace’s CDH Story
Told by: Cary
Scarlett Grace
On June 27, 2013, we found out we were pregnant, due March 2, 2014. We had just moved, via military orders, to Germany and decided we wanted another baby. Scarlett’s older sister was only 11 months old when we found out we were expecting again. Although we were trying to conceive, we didn’t expect it to happen so quickly. None the less, we were ready to start our journey with two under two, once baby number two arrived. We were excited, nervous, and anxious to meet our new baby. The pregnancy was a breeze. On October 15th, we found out we would be having another girl. Just like her older sister, she looked just like their dad. I could tell she would be much different than her big sister. While I was pregnant, she was over the top energetic most of the day, and even a bit feisty when daddy would try to feel her kick and move. The pregnancy progressed well, with a thought that I had too much fluid, which at thirty-two weeks got us another ultrasound. Everything turned out just fine, and baby was so beautiful. After long consideration, we decided Scarlett Grace would be her name, and when we met for the first time, we knew it was the perfect choice. We were to decorate her room in turquoise and pink. We had everything we needed, ready for her arrival.
At 1:30 a.m. on Monday, February 24, 2014, I was lying in bed awake, as I couldn’t sleep with a feeling that it was just about time. Suddenly, my water broke. Excited, nervous, anxious, tired and many other emotions were running through us as we got ready to head to the hospital to meet our baby girl. Labor was quick. At 4:58 a.m. Scarlett Grace made her entrance to the world. They laid her on my chest and she stared into mommy’s eyes. They suctioned her, she tried so hard to cry, but couldn’t. That’s when we knew something wasn’t right. Near the end of my pregnancy, I was haunted by the thought of death. Not towards Scarlett specifically, but I couldn’t shake the bad feeling I had, and just chocked it up to hormones and anxiety over having a new baby in the house. During labor, when I got my epidural, the name of the anesthesiologist was the same as a person at one time in our lives, who was pretty horrible. When he walked into the room, my heart sank, and I knew something was wrong. Never in my wildest dreams would I have imagined what was about to happen. Scarlett was taken from my arms and intubated in the delivery room. She was then rushed off to have an x-ray to see what was going on; why she wasn’t able to breathe on her own. When they knew what was wrong, they came back to tell us she had a right-sided congenital diaphragmatic hernia. I had never heard about this condition. My husband, who is an LPN had only briefly heard of it, but didn’t know much. They went on to tell us that she was critical, had a decent chance of surviving, but that she would have to be transferred to another hospital that was equipped to deal with her situation. Our friend who worked in the NICU, put calls out for prayers. People from every inhabited continent were praying for our baby girl.
| (mommy holding Scarlett at birth) After what seemed like forever, traffic was horrible, the transport team arrived to take baby Scarlett to the new hospital. We were told we weren’t allowed to go with her in the ambulance. The hospital discharged me immediately so that my husband and I were able to go be with her. The hospital was an hour away, andthe drive, again, seemed likeforever. When we got to the hospital, we found where Scarlett was and got to see her finally. She was hooked up to many tubes and machines, and after our first daughter spent her first eleven days in the NICU, we weren’t too overwhelmed or intimidated by what we saw. The doctors then came in to tell us they were about to start the hour and a half long process of the ECMO surgery to get her strong enough for her repair surgery. After the surgery, the doctors called us back to her room. They told us that the ECMO surgery was successful. They also told us at that point, that her chance of survival was 70%. Since both of her ultrasounds, including the one at 32 weeks were completely normal looking, they said there was a good chance that her lung tissue was probably developed up to at least 32 weeks, which meant that if she made it through the surgery, she’d have a relatively short NICU stay and would get to go home with us after that. They added though, that the next hours were critical, so be prepared. After hearing that the surgery was successful, and the odds were in her favor, we started feeling hopeful that we would make it through this. However, shortly after, they found a bleed in her belly. When she was getting the chest tubes inserted when she couldn’t breathe on her own at birth, her liver was punctured, and was bleeding badly due to the Heparin used to thin her blood for the ECMO process. They had to add clotting factors back to her blood to try and stop the bleeding. They told us it would be a little while to get it stopped, but they were managing it. Adding clotting factors back in to her blood came with its own set of risks, though. We were now having to be cautious of brain bleeds, which is a common problem seen with the ECMO therapy.(Scarlett Grace) It had been a long day, we were hungry, tired, and anxious. We went to get a hotel room on the hospital grounds so we could stay close. Some friends came to visit us to show their support and help us in any way they could. We went back Scarlett’s room to see her one more time before we would head to bed for the night. The doctor’s told us they would call if anything went wrong during the night. After getting settled into our room, we went to sleep. We slept through the entire night, with not a single phone call. When we woke up and realized this, we were ecstatic. There were no problems through the night. We hastily got dressed and ready to go see Scarlett. When we arrived at her room, the doctors were preforming an ultrasound on Scarlett, which we were told was just a normal checkthat they do, and changing shift so we waited outside. When we went in, they told us everything went well through the night, but that the ultrasound they were just performing, may have shown a spot in her head. They couldn’t really tell what it was if it was anything. They said they would have to do a more detailed scan. We were told that we could stay in the room as long as we wanted. We hung out in the room with Scarlett for a while, then went to get some breakfast. When we returned, we got horrible news. Scarlett had bleeding between her brain and skull, and with the clotting factors they were adding to stop thebelly bleed, the blood around her brain was now clotting as well. The doctor told us that the team of doctors would have to discuss what our next move was. The team wasn’t all there so we had to wait a couple of hours. We called our friends to tell them the news and they were there shortly after, so we went to find lunch while we were waiting on the doctors. While having lunch, we got a phone call from the doctor, telling us that they were ready to discuss with us what was going on as far as progress, and what we were to expect at this point. When we showed up they took us to a conference room to tell us what was going on. The doctors looked solemn; were quiet, and we knew what they were going to tell us. The doctors explained that, had we known about her condition before her birth, Scarlett would have probably had a different outcome. They were hopeful that she would make it, but the belly and head bleeds were not problems they expected to face. Ultimately, because of the brain bleed, the ECMO had to be stopped. They informed us that they had tried lowering the amount of support she was getting by a very small amount, but she couldn’t handle it. They told us she would die once we took her off of the machine. They would be doing the surgery to remove the ECMO shortly after, once the surgeon arrived. |
When the procedure was done, we got to go in to the room and hold her for a little while before they would turn off the oxygen she was receiving. Once we were ready, they turned off the oxygen, and we watched her pass, so peacefully at 3:45 p.m. on February 25, 2014. The doctors had a leave briefly to clean her up and remove the rest of the tubes she was connected to. When they called us back, we got to bathe and dress her to get her ready to go to the mortuary. Then we got to stay in the hospital chapel with her for a few hours until it was time to leave. The following week we held a viewing for our friends, and a memorial at the church we attend. The next weekend we flew home to the states to have a funeral and bury her next to her grandmother. Our friends, family, and church family helped us so much during this time, by watching our older daughter and helping us in any way they could, really making this stressful time, much less stressful. We are moving forward, and hope to be able to raise awareness to others by sharing Scarlett Grace’s story. Her life was short, but had so much meaning. We believe in Christ with all of our hearts, and that’s all her life was about. She brought a world to their knees in Jesus’ name. We love and miss her more than we can say, but we know her short life was for a beautiful purpose, and we couldn’t be more proud of what she accomplished.
This is shared with permission from it’s original source, which you are invited to visit: Scarlett Grace’s CDH Story
