Virginia Addison Acord
February 17, 2009 - March 11, 2009
San Francisco, CA
This is Addison’s story. She and approximately 799 other babies have lost or will lose their lives to Congenital Diaphragmatic Hernia (“CDH”) this year.
My name is Marion Acord, and I have been married to my wonderful husband, Jason for 6 years. Last July, we found out that we were expecting our first child. On October 21, 2008, our daughter, Addison, was diagnosed with CDH at 19 week gestation. Until that day, I had never heard of CDH and was totally devastated. From that point forward, we went from specialist to specialist all over the country to decipher what was CDH and how it was to be treated. On December 8, 2009, we began our journey in Cincinnati at Children’s Hospital where we met with a team of doctors and endured many hours of testing. After this meeting, they told us that Addison had a lung to head ratio (“LHR”) equal to .7 with her liver, spleen, stomach, and intestines in her chest cavity, and her chance of survival was 30%. We pleaded with the doctors about treatment options to increase her chances of survival. We were told that UCSF had discretionary approval to perform a surgery inutero which may increase her chances of survival. On December 15, 2009, we journeyed across the country to meet with the doctors. After enduring another long day of testing and numerous family meetings with the CDH team, we were told that Addison’s LHR had was calculated to be between .9 and 1.2 with all abdominal organs in her chest cavity. Due to the diagnosis, we did qualify for the experimental procedure, but it had to be done prior to 26 weeks gestation which was December 20, 2008. Jason and I had 24 hours to decide whether or not to pursue the surgery. After several hours of talking and praying, we decided to leave it in God’s hands, but felt confident that UCSF was where we needed to be for her neonatal care.
Jason and I relocated to San Francisco, CA on February 6, 2009. At 10:43 pm on February 17, 2009, Virginia “Addison” Acord was born via c-section. She was immediately given to the neonatologists to be incubated and stabilized. The neonatologists breathed the first breath of air into my daughter’s lungs through hand ventilation. It took the doctors about 2 hours to stabilize her enough to move her from the OR to the ICN. Once in the ICN, Addison was placed on the high frequency oscillating vent to breathe for her. She was also heavily sedated to ensure that she did not try to breathe on her own. Her first days of life were spent on the oscillating vent with many medications to control her heart rate and blood pressure and to keep her sedated and pain free. On the third day of her life, the doctors told us that she had begun a downward spiral with the pulmonary hyper tension and would need ECMO to survive. Jason and I prayed and prayed and miraculously she stabilized without the help of ECMO. After this episode, the doctors put her on Flolan to assist with the pulmonary hypertension. She remained steady and stable for the next seven days. On the 11th day of her life, Addison was baptized and then put on ECMO to allow her lungs and body to rest. The doctors told us that she would be on ECMO 5 to 7 days but no more than 14. On the 6th day of her ECMO run, the doctors attempted to wean her off the ECMO machine; during the first 15 minutes, the monitors were going crazy and she had to be hand bagged to get her stable. After the initial shock, her stats stabilized and she remained off ECMO for 45 mins. The doctors said that she did well, but another day of rest would do her good, so on the 7th day of her ECMO run, another attempt to remove her from the machine was done. This time she did not do as well due to fluid retention. The doctors told us to leave her on ECMO over the weekend in an attempt to reduce her fluid. Over the weekend, the ECMO machine began to fail, so additional blood product was necessary to maintain her stability so she was unable to get rest and rid herself of the fluid. On Monday, March 9, 2009, the doctors told us that the ECMO machine was failing and that Addison was not progressing. We were told that we had two options: (1) take her off the machine and let her go to heaven or (2) To change out the failing oxygenator on the ECMO machine and leave her on it for another few days. The doctors told us that if we opted to keep her on ECMO that Thursday would be her last day on the machine and that one of three things would have to happen: (1) she would have surgery to remove the cannulas from her neck and come off ECMO, (2) she would have her repair surgery on ECMO, (3) she would be removed from the machine and allowed to go to heaven. The first two options required her to rid herself of the fluid that had been built up and to regain her strength. Jason and I both were not ready to let her go so we had them change out the oxygenator and add a kidney function to the ECMO machine. On Wednesday, March 11, 2009, the doctors came by to schedule a family meeting. During the meeting, they told us that Addison was not progressing and that they had done all that could be done to help her. They recommended that we end her life support. Jason and I were devastated. The doctors allowed us to spend time with her prior to disconnecting her from ECMO. I was able to wash and comb her hair. At 11 am, Jason and I were given a private room and the doctors disconnected Addison from ECMO and brought her to us on a hand ventilator. Dr. Keller placed my Addison in my arms, and she took her first unassisted breath. I wrapped her in her prayer quilt, held on to her, and sang to her for about an hour until she took her last breath and went to heaven to be with God and Jesus. My Addison fought long and hard for 22 days to stay here with her mommy and daddy but earned her angel wings on March 11, 2009.
I hope that Addison’s story touched you and that you will help me and the many other CDH families in our efforts to raise awareness for this defect that claims the lives of so many babies. I do not want another family to have to live through the devastation that is brought on by CDH. It kills me that the medical professionals know no more about the causes and cures for this defect than they did 30 years ago. We need someone to champion our efforts to bring awareness to this defect so that the attention will be paid to it in order for the causes and a cure to be found. Are you willing to be the one that makes a difference to 1,600 families a year?