Cherub Connor with Santa

Now with the holidays basically here, we long to hold our sweet boy even more, dress him in cute Christmas outfits, watch him open his presents from under the tree, and even little things, like taking pictures with “Santa”. This week I was inspired by another picture like this and knew in my heart I had to do it! My husband was very excited too. As parents of an angel, you don’t get to do many “normal parent” things, but this was something we could still do and honor our beautiful son. I won’t lie, it was very emotional and as the tears were streaming down my face, I was so touched by how thoughtful and warm hearted “Santa” and his helpers were. They made this moment even more special for us. Making memories with our son isn’t something I thought we would be able to do after he passed but I was wrong. We include him in our family traditions as much as possible, and speak his name often. We are so proud of him and honoring him in small ways like this, is the least we can do. What an incredible life he served, and the impact he left is still all around us! We love you Connor Michael.

My husband Michael and I found out we were expecting, after a long and hard time trying for a baby, in June 2014. The happiest moment of our lives thus far! I was carrying our miracle baby. At 13 weeks we had screenings done and that came back with 1/8 chance of Down syndrome — 2 weeks later we found out it was a false positive. Since that happened they put me on high risk and scheduled a level 2 ultrasound/High Risk Anatomy Scan at 20 weeks. It was scheduled on the day of my birthday. Looking at my son, who we named Connor, all day for my birthday, how could it get any better, right?! During the appointment the tech got very quiet and wouldn’t smile. The doctor came in and started to tell us our son has Congenital Diaphragmatic Hernia (CDH). Where the diaphragm isn’t fully formed or has a hole allowing the organs from the abdomen to move into the chest cavity resulting in compressed lungs, not allowing them to grow or form fully. Connor had his stomach, large and small intestines, liver, and spleen all up in his chest. His lungs were tiny and under developed but visible. And his heart was pushed all the way to the right side. We were devastated. In shock and disbelief. It was like I was floating above my body as the doctor spoke. She offered several times to terminate. CDH babies have a 50/50 chance at survival in general. But each case is so unique they can range from 1% to 90%. We chose to not know Connor’s chance of survival as we had already decided this was our baby. Our son. Our miracle. We would not give up on him no matter what number they gave him. I knew we would fight for him and the Dr.’s would do everything they can so why know a number. Besides the surgeon we met with who specializes with CDH said that even the 90% ones could do poorly and the 1% babies could do very well and we wouldn’t know until he’s here. We proceeded with hope and faith and prayed like crazy! We made a page on Facebook for prayers and to keep everyone updated (Connor’s CDH Journey). Had a baby shower, decorated the nursery etc. 3 weeks before my due date I was relocated to live a couple hours from home to be minutes from the hospital that has the equipment and surgeons to help CDH babies, as there aren’t many in world. I was then induced on Monday February 16th and after 2 days of labor; they decided to do a C-section. I had Polyhydramnios (very high amniotic fluid). The day I checked in to be induced I was at 42 and the normal range is 12-20. This can cause too much pressure on my lungs, where I wouldn’t be able to breathe and if I tried to have a natural labor, the umbilical cord could come out first, possibly strangling Connor. Plus he was a very large baby so they weren’t sure if he would get stuck at his shoulders. So we proceeded with a C-section. Connor Michael Gast was born on February 18th at 11:55am. Weighing a whopping 9 lb. 13 oz. 22 inches long! My strong big boy. He wasn’t breathing so they intubated him and took him away. I never got to see him. My husband got a real quick look then followed him as they worked on me. After 12 hours I was finally able to meet my son. My perfect baby boy. I was in love! After 1 day they transferred him to the children’s hospital across the street because they couldn’t stabilize him. He was placed on a lung/heart bypass machine called ECMO. I demanded to be released after that and went to be with him the next day. Connor lived in the NICU on ECMO for 17 days. They found a brain bleed (side effect from the blood thinners he was on to allow ECMO to work properly) that forced us to remove him off ECMO. Unfortunately his body wasn’t ready yet. He passed away from CDH and Pulmonary Hypertension. We held Connor for the first and last time on March 7th. I sang to him, we read him his nightly story and said a bed time prayer and kissed his face without tubes. I am empty without him. My heart left with my son that day! I miss him and love him with all that I am. I pray I can make my son proud and one day be together again for eternity. Our sweet baby boy is our angel watching over us.

 
Many blessings this Christmas from our family to yours,
The Gast Family
 
 
What is Congenital Diaphragmatic Hernia? Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births. The cause of CDH is not yet known. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. 50% of babies born with CDH do not survive. 
 
CHERUBS is a charity committed to helping families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic Hernia through research and awareness while supporting the CDH community.
For more information about Congenital Diaphragmatic Hernia and CHERUBS visit www.cherubs.org.

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