Cora’s story started when her parents learned they were expecting her. At first, everything seemed normal, but as the pregnancy progressed, the family received some devastating news. The little one had an abnormal heart, or half-heart syndrome (HLHS). She also had a hole in her diaphragm.
The day the parents learned how grim their unborn daughter’s condition was and that she could not possibly live with such flaws, the father decided her to be named Cora. “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,” Cora’s mom shared.
The parents did all in their power to transfer their medical care to the University of Washington and Seattle Children’s Hospital.When they finally switched, doctors there ruled the hole in the diaphragm out. That was great news and meant the baby still had a chance.
On the day when the induction was supposed to take place, mom Shannon received a phone call and learned the birth of her baby needed to be postponed for some time because of an infection in the hospital’s operating rooms. Later, however, the rooms were closed and she was transferred to OHSU in Portland, Oregon.
Shannon described the moment the process of birth was about to start and what was happening afterwards. “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.”
The doctor then appeared and this mom was told to push. Baby 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,” Shannon described her baby girl.
“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.”
The sweet baby had her open-heart surgery at just two days old. “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,” the mother explained.
A day after the surgery, the couple’s older daughter, 21-month-old Chanel, met her baby sister and was over the moon.
Sadly, Cora’s SATS and blood pressure weren’t improving. Doctors then discovered that her pulmonary arteries were narrowed.
As a result, the surgeon decided they needed to wash out Cora’s chest. Sadly, this didn’t really work and 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!” Shannon explained in her post.
“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 had her second open-heart surgery. The doctor explained that if this surgery wasn’t successful, there was nothing more they could do surgically for baby Cora.
The following day, Cora opened her tiny eyes and was removed off ECMO two days after her second surgery. She was fitted with a feeding tube and the progress was evident.
As she needed to shed more fluids, she was placed on hemodialysis to help her body rid itself from the fluids. The family went to check on their daughter, but the moment they sat in the car they received a phone call. The nurse told them Cora wasn’t doing well and was receiving CPR.
After 90 minutes of CPR, they could finally reconnect her to the ECMO circuit. When they went to check on her on Father’s Day, Cora was swollen.
“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,” Shannon explained.
Her heart was ready to beat on its own, but her lungs weren’t so they relocated her ECMO cannulas from her chest to her neck as a result. Doctors said that if everything went properly, they would seal her chest. She went to the OR for the third time.
“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.”
Over the weekend the bleeding stopped, but the parents now needed to make a decision. According to Shannon’s post, they were given 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.”
They decided choosing Seattle was possibly the best they could go with, but at the same time, they were aware that their girl’s time on Earth was coming to an end.
“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.”
Baby Cora was gone. From her mother’s arms, she slipped to the arms of God.
“Finally, she peacefully transitioned from my arms to the arms of our wonderful Savior. She had finally found relief from the stresses of life,” Shannon wrote in her post.
Rest in peace baby Cora. You are dearly missed.
This story and the photos have been shared by Cora’s mother, Shannon Welton.
Our thoughts and prayers are with the family.
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Bored Daddy
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