Cora’s story started in September 2018 when we found out we were pregnant. I had a blood test on November 5th and we found out it was going to be a girl! We are really looking forward to our second child! Our heart’s journey began on January 31, 2019, when the radiologist said in an autopsy examination, “The heart appears to be abnormal.” Those words changed the course of our lives for the rest of our lives.
A few days later we were diagnosed with the Swedish Hospital in Seattle. Half-heart syndrome (HLHS) and hiatal hernia (a hole in the diaphragm). We were told she couldn’t live with these two serious flaws. We were all sad. We went for lunch that day, after Cora’s diagnosis but before we knew the prognosis. My husband Derek chose the name “cora” for the sandwiches at Cheesecake Factory because it resembles the Spanish term “corazon”, which means heart. I cried and replied “It’s beautiful” when he suggested it.
We have made the decision to transfer our medical care to the University of Washington and Seattle Children’s Hospital. It took my health insurance nearly three weeks to switch, and when we finally saw each other in late February, they ruled out a hernia diagnosis. We were so excited! You had a chance! We were excited and knew our prayers had been answered! During the rest of the pregnancy, I had multiple ultrasounds, fetal echocardiograms, and non-stress tests. My insertion date is scheduled for May 22nd when I will be 39 weeks pregnant.
Cora was to be born at the University of Washington, then transported to Seattle Children’s Hospital within a few hours. Within a week of her birth, she would undergo her first open-heart surgery. However, on the day of my induction, I received a phone call from my doctor informing me that my induction would have to be postponed until the following week due to a fungal infection in Seattle Children’s operating rooms. We were all disappointed, particularly me. I couldn’t wait to meet my little girl. So we sat and waited.
On the 24th of May, however, we received another phone call from my doctor. She informed us that Seattle Children’s Hospital had closed all of its surgical rooms and that we would have to transfer the next day to OHSU in Portland, Oregon! We were stunned; this was not what we had anticipated, and we became quite concerned. I was taken to OHSU in an ambulance the next morning, while Derek drove down independently. That weekend was spent inpatient, where we met cardiologists and Cora’s surgical team. My labor was induced late Monday night, May 27th. Pitocin was started at 12:45 a.m., and my water was ruptured a few hours later. The contractions were too much for me to bear around 5:30 a.m., and I knew I still had several hours to go. So I requested an epidural.
The anesthesiologist got to work and got the epidural in place, but he couldn’t get spinal in. As a result, I had to wait for the medications to take effect. I started throwing up as soon as the pills started flowing. My doctor checked my progress and found that I was still just 7cm tall. It was 7 a.m., and it was time for a shift change. She opted to go because I still had some progress to make. I got sick again as soon as she went, and I was having a long and painful contraction at the same time. ‘Are…you feeling like you’re ready to push…?’ my nurse inquired. ‘Ummm…I believe so?’ I replied. So, six minutes after my doctor checked me and found that I was at 7cm, my nurse decided to check me again to make sure I wasn’t fully dilated. ‘Yes!’ she replied. ‘You’re totally dilated!’ I exclaimed as I dashed to the door to summon my doctor.
I puked again, and I could feel Cora attempting to give birth. My nurse was urgently calling for a doctor to come to my room while on the phone. I remember being terrified as I glanced at Derek. ‘…She’ll have to deliver Cora herself!’ I muttered to him. I knew Cora would require quick medical attention after she was born, and I was terrified she wouldn’t get it because she was due right away and we didn’t have a doctor.
My body began to push and I couldn’t control it as our room quickly filled with people rushing around making things ready. A doctor rushed into the room, aided by a nurse, who quickly dressed her and sat down at the foot of my bed, telling me I could push immediately.
Cora Orianna Lee Welton was born on May 28th, 2019, at 7:09 a.m., weighing 6 lbs 15 oz and measuring 19 inches long. She was pink and sobbing when she emerged, and she was placed on my stomach. She had a lot of hair, a cute dimple on her chin, and the most gorgeous blue eyes I’d ever seen.
Cora underwent several echocardiograms, a CT scan, and was prescribed prostaglandin to keep a vessel called the Ductus open so that blood could flow back to her heart from her lungs. Cora’s prescription made her forget to breathe on occasion. We saw her during a nasty apnea period the day she had her CT scan. This was the first time our child had experienced something so terrible.
Her doctors chose to operate on her for the first time on May 30th, when she was only 2 days old. Cora has wheeled down the corridor to the operating room for the Norwood Procedure, her first open-heart surgery. That was the most difficult thing we had ever had to do as parents at the time. We prayed fervently for the surgeons’ hands to be steady and for Cora’s surgery to be successful.
It was sad to see Cora after the surgery. Because her chest was still open, we had to wear masks in her room. She was very pale due to poor oxygen saturation and blood pressure. She appeared to be huge and lifeless. They administered Cora a variety of drugs over the next several days in an attempt to boost blood flow to her lungs. Her body began to swell as a result of the numerous medications she was taking.
Chanel, our 21-month-old daughter, finally met her baby sister the day after Cora’s operation! On May 31st, my mother drove the two of them down to Portland so that we wouldn’t have to be apart any longer. Chanel’s first meeting with her baby sibling was thrilling! Every day, she looked forward to seeing ‘Baby Cora.’
Every dawn brought with it a sense of dread. After the procedure, Cora’s life was in shambles. They didn’t know why her SATS and blood pressure weren’t improving. When it came to changing her medicine dose, they opted to take it slowly at first. When it didn’t work, she got an echo, which revealed that her pulmonary arteries were narrowed. They decided to remove the patch from her chest so they could examine inside and rinse her chest to see if there were any obstructions. However, Cora’s team decided to cancel the treatment the next day because she appeared to be doing extremely well. We were ecstatic! So many prayers had been uttered for our little girl to start improving, and they had been answered!
Cora’s rising trend, however, only lasted one day. Her surgeon, Ashok, determined on June 3rd that they needed to wash out her chest after all. We were all hoping that this treatment would help her with her problems. Unfortunately, the results were inconclusive. They booked her for a cardiac catheterization the next day to try to figure out what was causing her blood pressure to be so low.
Cora went to the cath lab the next morning for her surgery. On her shunt, they used a stent to keep a blood channel open. They thought it was a success when she came out! Her SATS had improved, and they were optimistic that this would be all she needed. And she did fantastically well for the next two days! Epinephrine, one of her blood pressure meds, was successfully weaned. She also had a Peritoneal Dialysis drain to assist remove fluid from her abdomen and give her kidneys room to begin working. Because of the fluid and drugs, she was quite bloated. Because of the fluid, her birth weight had doubled by one week after she was born. It was painful to see her grow that large. However, the PD appeared to be assisting her! The Lord had heard our prayers and had answered them!
Our tiny girl, though, began to struggle once more. Her doctors suspected she could require more surgery, but they wanted to have a CT scan first to figure out what exactly needed to be fixed. Because the CT scan revealed nothing remarkable, they assumed she had pulmonary hypertension, which means her lungs’ capillaries were constricted. As a result, they prescribed Cora a medicine to assist dilate her pupils. Fortunately, this appeared to be of assistance! They kept a tight eye on her over the weekend, hoping for continuing progress.
A phone call from the PICU woke us up at 1:07 a.m. on Monday, June 10th. As Derek answered my phone, I can still hear it clearly in my mind. ‘Is this Cora’s father?’ Cora was having a very difficult night, according to her, and they had maxed out her Epi, but her pressures were still too low. They were preparing to put her on ECMO, or an artificial heart and lung machine. An hour later, Ashok called to inform us that she had been placed on ECMO and that another surgery would be performed first thing in the morning. We were terrified. We were well aware of the gravity of ECMO. It’s as though you’re on life support. That so many people who try it never get off.
Cora was taken to the operating room at 8 a.m. for her second open heart surgery in 13 days. They expanded a constriction in her pulmonary artery that they had previously dismissed as unimportant. Her Sano shunt was also replaced with a larger one with a valve to avoid backflow into her lungs. The fact that the valve had to come from another infant who had perished was terrible. We thought about and hoped for peace for the family who had lost their baby and was the source of this valve. We couldn’t imagine the anguish they were going through.
Cora was still on ECMO when she came out of surgery because her care team wasn’t ready to take her off yet. Ashok sat down with us and informed us that if this surgery didn’t help her start to improve, there was nothing further they could do surgically for her… We had no choice except to put our trust in God to cure her if it was His desire.
The following day was one of the happiest days of my life! For the Initial TIME since her first operation, Chanel and I saw her eyes open! ‘Baby Cora…Eyes…Open,’ Chanel said. It was a thrilling experience! Chanel continued saying it again and over. She adored her newborn sister and was delighted to see her open her eyes.
Cora was removed off ECMO two days after her second surgery! We were ecstatic! We were overjoyed since she was doing so well and her puffiness had decreased as a result of the fluid being drained through the ECMO circuit. The next day, she was fitted with a feeding tube! Derek was able to view her with her eyes open for the first time, and she was able to take a binky! Everything was going so beautifully! We had the best and longest stretch of progress with her during this time. This extended period lasted nearly six days!
Cora still needed to shed more fluid and her kidneys were failing, so she had a procedure to link her to hemodialysis to help her body rid itself of the excess fluid. We got in the car and drove to see her as soon as we got the phone call that it was over and successful.
But, just as we were getting close to the Ronald McDonald House, we received another call. The worst phone call of my life. Cora was not doing well, the nurse stated, and she was receiving CPR. We needed to go to the hospital right away. It was the most terrifying night of our life. Cora’s room was surrounded by physicians and nurses when we entered. They were frantically calling the lab, attempting to provide blood products to her room, and preparing the ECMO machine for her. Ashok was putting a lot of pressure on her little, blue body. We were terrified that this was it. They were ultimately able to reconnect her to the ECMO circuit after 90 minutes of CPR. It was 1:30 a.m. on Father’s Day when we were finally able to see her. Cora was swollen in a way we hadn’t seen her before.
A head ultrasound revealed a few small regions on Cora’s brain that were damaged after 90 minutes of CPR. The doctors hoped the damage wouldn’t be severe, and it didn’t appear to be because Cora was still awake and wiggling. They did, however, connect her to an EEG for a day to monitor her brain activity. They were able to remove the EEG the next morning because everything appeared to be normal! She received a new breathing tube because the one she had was beginning to leak, a new IV, and a Bronchoscopy to clear her lungs over the next few days. The 20th of June was a memorable day. Since the first time she went to surgery, Cora has looked her finest. She really appeared to be so lovely and at ease.
Despite the fact that Cora appeared to be making significant progress, her team was nonetheless concerned about her need for ECMO. Her heart was robust and ready to beat on its own, but her lungs still need assistance. They chose to relocate her ECMO cannulas from her chest to her neck as a result. They also wanted to restart peritoneal dialysis to assist her kidneys. They would also seal her chest if everything went properly. We were overjoyed! Cora went to the OR for the third time on Friday, June 21st.
However, unlike her previous two procedures, this one did not proceed as planned. We had the first of several unpleasant conversations with the Cardiologist on Saturday morning. Cora’s Aorta was bleeding uncontrollably. That night, they gave her a liter of blood because they were afraid she wouldn’t make it through the weekend.
We realized we’d need a miracle at this point. We used social media to reach out, and Cora quickly had thousands of people praying for her from all around the world.
We hoped for miracles, and God answered our prayers. Over the weekend, the bleeding stopped, and I knew God had intervened. Cora, on the other hand, had more jobs to do. She started suffering seizures on Monday morning. Cora’s squad was increasingly concerned about her. That night, we had another difficult discussion. They were convinced Cora wouldn’t make it. They presented us with a choice. We had three options: stay at Doernbecher and continue on our current path, start comfort care and let her go, or transfer back to Seattle Children’s Hospital in the hopes that she would improve enough to be a candidate for a heart and lung transplant one day. We were devastated to be forced to make this decision.
We realized we couldn’t make this decision without prayer and trust. Derek and I hoped for an answer on Tuesday morning. When we were ready, we jotted down our feelings on separate slips of paper. We passed the papers back and forth, and when we opened them, each of them said the same thing: ‘Seattle.’
Derek and I both began to believe that Cora’s time on Earth was drawing to a close as the day proceeded. Instead of being the solution, we understood it was just another lesson. Cora taught us that we needed to pray and have enough faith in each other to know that we would both write down the same word, but that the word wasn’t the solution in and of itself.
We opted to spend the entire day with our darling Cora on Wednesday. It had been a difficult day. I changed her diaper for the first time, nurse Holly clothed her in a cute outfit I provided, and we both got to hold her for a few hours. A selfless photographer from the Portland area took family portraits for us. We sang songs to Cora, read books to her, and expressed our gratitude to her for everything she has taught us. We were happy for her to begin her Heavenly mission, even though we knew we would miss her terribly.
On the morning of June 27th, 2019, we dressed up to say our goodbyes to Cora. We put on the nicest clothes that we had with us. Cora’s hair was rinsed, and I used a washcloth to carefully wipe her body. I swaddled her firmly and put her in clean clothing with our favorite headband. Chanel kissed Cora on the forehead when we picked her up. We advised her to say her goodbyes. ‘Bye-bye, Baby Cora,’ she said. My mother said her goodbyes and escorted Chanel away from Cora, leaving Derek and me alone.
We were really fortunate to be able to spend Cora’s final moments with her. Derek was the first to hold her. He kissed her and sang to her, and he was simply delighted to have her in his arms. The nurse Logan removed her breathing tube when it was my turn to hold her so that we could view and kiss her face. It was wonderful to be able to see her entire face for the first time! She was breathtakingly lovely. She was awake and her eyes were filled with genuine affection for us.
They increased her pain medicines and turned off ECMO when we felt it was appropriate. Cora is incredibly devoted to us. Derek and I wept, pleading with her to let go. She persisted in her desire to be with us. ‘We’ll be together shortly,’ says the narrator. ‘You must return home,’ we advised. Finally, she peacefully transitioned from my arms to the arms of our wonderful Savior. She had finally found relief from the stresses of life.
Cora is our sweetheart, and we adore her. I eagerly anticipate the day when we can finally embrace her. I will be eternally grateful to her for what she has taught me.”
The story and photos: Courtesy of Shannon Welton