‘We begged her to let go. She kept fighting to stay with us. ‘We’ll be together soon. You need to go home,’ we said.’: Mom says daughter suffering from CHD ‘passed peacefully in my arms,’ is ‘finally at peace’

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“Cora’s story began in September of 2018 when we first discovered we were pregnant. On November 5th I had a blood test and we found out it was going to be a GIRL! We were so excited to be having our second daughter! On January 31st, 2019, our heart journey began when the radiologist at our anatomy scan said, ‘The heart appears to be abnormal.’ Those words changed our lives forever.

Courtesy of Shannon Welton

A few days later, we got the diagnosis at Swedish Hospital in Seattle. HLHS (half a heart) and a Diaphragmatic Hernia (a hole in the diaphragm). We were told she wouldn’t survive with these two severe defects. We were absolutely devastated. That day, after we received Cora’s diagnosis, but before we got the prognosis, we went to lunch. Over sandwiches at the Cheesecake factory, my husband Derek chose the name ‘Cora’ because it’s close to the word ‘corazon,’ which means heart in Spanish. When he suggested this, I cried and said, ‘It’s perfect.’

Courtesy of Shannon Welton

We decided to transfer our care to University of Washington and Seattle Children’s Hospital. The transfer took over 3 weeks to be approved by my health insurance, so at the end of February when we were finally able to be seen, they ruled out the diagnosis of the hernia. We were so happy! She had a chance! We felt so blessed and knew that this was an answered prayer! Over the remainder of my pregnancy, I had countless ultrasounds, fetal echo’s, and non-stress tests. We set my induction date for May 22nd when I would be 39 weeks.

The plan was to deliver Cora at the UW, then she would be transferred to Seattle Children’s Hospital within just a few hours. She would then have her first open heart surgery within a week of being born. But on the day of my induction, I got a phone call from my doctor letting me know they needed to delay my induction until the following week due to fungal contamination in the operating rooms at Seattle Children’s. We were pretty disappointed, especially me. I was so ready to meet my little girl. So we waited.

Moselle Campbell Photography

But two days later on May 24th, we got another phone call from my doctor. She told us that Seattle Children’s Hospital had closed all of it’s operating rooms and that we needed to transfer to OHSU in Portland, Oregon, the next day! We were so shocked, this was not what we had planned and we became very anxious. The next morning, I was transferred to OHSU in an ambulance while Derek drove down separately. We spent that weekend inpatient, meeting cardiologists and Cora’s surgical team. Late at night on Monday, May 27th, my labor was induced. I started Pitocin at 12:45 a.m., then my water was broken a couple of hours later. At 5:30.a.m., the contractions were more than I could bare and I was sure I still had several hours left to go. So I asked for the epidural.

Courtesy of Shannon Welton
Courtesy of Shannon Welton

The anesthesiologist began his work and the epidural was finally placed, but he wasn’t able to place a spinal. So I had to wait for the meds to kick in. As soon as the meds started flowing, I started throwing up. My doctor decided to check my progress and I was still just 7cm. At that point it was 7 a.m. and time for a shift change. She decided since I still had some more progressing to do, she left. As soon as she left I got sick again, while at the same time having a long and excruciating contraction. My nurse asked me, ‘Are…you feeling like you’re ready to push…?’ I answered, ‘Ummm…I think so?’ So just six minutes after my doctor checked and I was at 7cm, my nurse decided to check me again just to see if I wasn’t fully dilated. Then she said, ‘Yep! You’re fully dilated!’ and ran to the door to yell for my doctor.

I threw up one more time and I could feel Cora trying to be born. My nurse was on the phone frantically yelling for a doctor to get to my room. I looked at Derek and I remember being so scared. I whispered to him, ‘…She’s going to have to deliver Cora herself!…’ I knew Cora would need immediate medical attention as soon as she was born, and I was so scared she wouldn’t get that because she was coming NOW and we had no doctor.

Our room instantly filled with people running around getting everything ready, my body was starting to push and I couldn’t control it. Just then, a doctor ran into the room, a nurse helped her gown so fast, she sat down at the foot of my bed and told me I could push now.

After just one push, Cora Orianna Lee Welton was born on May 28th, 2019, at 7:09 a.m. measuring 6 lbs 15oz and 19 inches long. She came out pink and crying and was laid on my tummy. She had so much hair, a sweet dimple on her chin, and the most beautiful blue eyes.

Courtesy of Shannon Welton

Over the next 2 days, Cora had many echocardiograms, a CT scan, and had to have a medication called prostaglandin to keep a vessel called the Ductus open in order for her blood to be able to return to her heart from her lungs. This medication caused Cora to forget to breathe at times. The day she had her CT scan, we witnessed her during a bad apnea spell. This was the first time we had seen something so terrifying happen to our child.

Courtesy of Shannon Welton

Her surgeons decided they would perform her first surgery on May 30th when she was just 2 days old. That morning, Cora was wheeled down the hall to the operating room for her first open heart surgery, the Norwood Procedure. At the time, that was the hardest thing we had ever had to do as parents. We prayed so hard for the surgeons to have steady hands and that Cora’s surgery would be successful.

Courtesy of Shannon Welton

Seeing Cora after the surgery was incredibly heartbreaking. We had to wear masks in her room because her chest was still open. Her oxygen saturation and blood pressures were low, so she was very pale. She was swollen and seemed lifeless. Over the next few days, they gave Cora a lot of medications to try to increase blood flow to her lungs. The amount of medications she was getting began to make her very swollen.

Courtesy of Shannon Welton
Courtesy of Shannon Welton

The day after Cora’s surgery, our 21-month-old daughter Chanel finally got to meet her baby sister! My mom drove the two of them down to Portland on May 31st so that we wouldn’t have to be separated anymore. It was so exciting to see Chanel meet her new sister! She Loved visiting ‘Baby Cora’ every day.

Courtesy of Shannon Welton

Each morning was always filled with anxiety. Things were pretty rocky for Cora after the surgery. Her SATS and blood pressure were still not improving and they didn’t know why. They first decided to slow down when changing the dose of her medications. When that didn’t work, she had an echo which showed some narrowing in her pulmonary arteries. They decided they would take the patch off of her chest to take a look inside and rinse her chest out to hopefully remove any obstructions. But the next day Cora’s team decided to cancel this procedure because she seemed to be doing really well. We were so excited! We had so many prayers being said for our little girl to start improving, and our prayers were being answered!

But sadly, Cora’s upward trend only lasted for one day. On June 3rd, her surgeon, Ashok, decided they needed to wash out her chest after all. We were all so hopeful that this procedure would solve the issues she was having. But it unfortunately was inconclusive. So they scheduled her for a heart catheterization the next day, which is another type of test to try to figure out what was causing her blood pressure to be so low.

Courtesy of Shannon Welton

The next morning, Cora went to the cath lab for her procedure. They placed a stent to hold open a blood vessel on her shunt. When she came out, they felt it was a success! Her SATS had improved and they were very hopeful that this was all she would need. And for the next two days, she was doing really well! They were able to wean one of her blood pressure medications, Epinephrine. She also got a drain called Peritoneal Dialysis to help pull out fluid from her tummy to allow her kidneys room to start working. She was so swollen from all the fluid and medications. By one week after she was born, her birth weight was doubled because of the fluid. It was absolutely heartbreaking to see her so big.  But the PD seemed to have started helping her! Prayers were being answered!

But once again, our little girl began struggling. Her team thought she might need to go back for surgery again, but they needed to do a CT scan first to decide what exactly they needed to fix. The CT scan didn’t show anything significant, so they thought maybe she had pulmonary hypertension, which means the capillaries in her lungs were tight. So they gave Cora a medication to help dilate them. Luckily this seemed to be helping! Over that weekend, they watched her closely hoping for continued improvement.

On Monday June 10th at 1:07 a.m., we were awoken by a phone call from the PICU. I can still hear it clearly in my memory as Derek answered my phone. ‘Hi, is this Cora’s dad?’ She told us that Cora was having a really hard night and they had maxed out her Epi, but her pressures were still too low. They were getting her set up to be put on ECMO, the heart/lung machine. An hour later, Ashok called us to tell us that she was now on ECMO, and that they would be performing another surgery first thing in the morning. We were so scared. We knew how serious ECMO is. That it’s life support. That so many who go on it, never come off.

At 8 a.m., they took Cora to the OR for her second open heart surgery within 13 days since her birth. They widened a narrowing in her pulmonary artery that they originally didn’t think was a problem. They also replaced her Sano shunt with a larger one and added a valve to it to prevent backflow from her lungs. It was heartbreaking to learn that the valve had to come from another baby who had died. We thought about and prayed for peace to come to the family who had lost their baby that this valve was coming from. We couldn’t imagine the heartbreak they were feeling.

Courtesy of Shannon Welton

When Cora came out of surgery again, she was still on ECMO because her care team didn’t feel comfortable yet taking her off. Ashok sat down with us and told us that if this surgery didn’t help her to start improving, that there would be nothing left surgically they could do for her… At this point, we really had to put our faith in God to heal her, if it was His will.

Courtesy of Shannon Welton

The next day was one of the happiest days! Chanel and I got to see her eyes open for the FIRST time since before her first surgery! Chanel said, ‘Baby Cora…Eyes…Open.’ It was so exciting! Chanel kept on repeating that phrase. She loved her baby sister and she loved seeing her eyes open.

Courtesy of Shannon Welton

Two days after her second surgery, Cora was taken off ECMO! We were so excited! She was doing so well, her swelling had gone down because the fluid was being pulled off through the ECMO circuit, we were so happy! She even got a feeding tube the next day! Derek was FINALLY able to see her with her eyes open, and she got to take a binky! Things were going so well! This was the best and longest stretch of progress we had with her. This long stretch lasted for almost 6 days!

Cora still had more fluid to lose and her kidneys weren’t working, so she had a procedure done to connect her to Hemodialysis to help her body get rid of the fluid. When we got the phone call that it was complete and it was successful, we got in the car to make the trip to go see her.

But just when we were only a couple of blocks away from the Ronald McDonald House, we got another call. The worst phone call. The nurse said that Cora was not doing okay, she was getting CPR and we needed to come to the hospital. This was the scariest night of our lives. When we walked in, Cora’s room was surrounded by doctors and nurses. They were running around, on the phones calling the lab, trying to get blood products to her room, trying to get the ECMO machine ready for her. Ashok was vigorously doing compressions on her tiny, blue body. We were so afraid that this was the end. After 90 minutes of CPR, they were finally ready to connect her to the ECMO circuit again. When we were finally able to come see her, it was 1:30 a.m. on Father’s Day. Cora was more swollen than we had ever seen her before.

Courtesy of Shannon Welton

After having CPR for 90 minutes, a head ultrasound showed a few small spots on Cora’s brain that were damaged. The doctors were hopeful that the damage wasn’t significant, and it didn’t seem to be because Cora was still so awake and wiggly. But they hooked her up to an EEG to monitor her brain activity for a day. The next morning, they were able to take off the EEG because everything looked normal! Over the next couple of days, she got a new breathing tube because the one she had was beginning to leak, she got a new IV, and she had a Bronchoscopy to clear out her lungs. June 20th was a special day. Cora looked her best since the first time she went to surgery. She just looked so beautiful and comfortable.

Although Cora had seemingly made a lot of progress, her team was still concerned about her being on ECMO. Her heart was strong and ready to beat without any support, but her lungs still needed the help. So they decided they wanted to move her ECMO cannulas from her chest to her neck. They also wanted to put her on Peritoneal Dialysis again to help her kidneys. If everything went well, they would also close her chest. We were so happy! So on Friday June 21st, Cora went to the OR for her third time.

But unlike her first 2 surgeries, this one didn’t go well. On Saturday morning, we had the first of a few very difficult conversations with the Cardiologist. Cora had an unstoppable bleed on her Aorta. They gave her a liter of blood that night and they feared she wouldn’t make it through the weekend.

Courtesy of Shannon Welton

At this time, we knew we would truly need a miracle. We reached out on social media, and pretty soon Cora had thousands of people praying for her on all parts of the world.

We prayed for miracles and God heard us. The bleeding stopped over the weekend and I knew God had granted this miracle. But Cora still had more work to do. Monday morning, she began having seizures. Cora’s team grew more concerned about her. That night, we had another hard conversation. They truly felt that Cora wasn’t going to live. They gave us a decision to make. We could stay at Doernbecher and continue on the course we were going on, we could start comfort care and let her pass, or we could transfer back to Seattle Children’s Hospital in the hopes that she would one day recover enough to be a candidate for a heart and lung transplant. We were so heartbroken to have to be faced with this decision.

Courtesy of Shannon Welton

We knew this wasn’t a decision we could make without prayer and faith. On Tuesday morning, Derek and I prayed for an answer. When we were ready, we wrote down on separate slips of paper what we felt. We exchanged the papers with each other and when we opened them up, they both read the same word, ‘Seattle.’

As the day progressed, Derek and I both began to feel more and more like Cora’s life here on Earth was coming to a close. We realized that instead of Seattle being the answer, it was just another lesson. That Cora taught us that we needed to pray and have strong enough faith to know that we would both write down the same word, but the word itself wasn’t really the answer.

We decided to spend all day Wednesday with our sweet Cora. It was an emotional day. I got to change her diaper for the first time, nurse Holly dressed her in a cute romper that I had brought, and we both got to hold her for a few hours. We had family photos taken by a selfless photographer from the Portland area. We sang songs to Cora, read books to her, and told her how truly grateful we are to her for teaching us so much. Although we knew we would miss her so dearly, we were excited for her to begin her Heavenly mission.

Courtesy of Shannon Welton
Courtesy of Shannon Welton

On the morning of June 27th, 2019, we got dressed to go see Cora for the last time. We dressed in the nicest clothes we had with us. I washed Cora’s hair and I gently cleaned her body with a washcloth. I dressed her in clean clothes and our favorite headband and swaddled her tightly. We picked up Chanel and she gave Cora a kiss on her forehead. We told her to say goodbye. She said, ‘Bye bye, Baby Cora.’ My mom said her goodbyes and took Chanel away so that Cora could pass with Derek and I alone.

Jen Berryman, Doula and Photographer
Jen Berryman, Doula and Photographer

We were so blessed to be able to spend Cora’s last moments holding her. Derek held her first. He kissed her and sang to her and just enjoyed having her in his arms. When it was my turn to hold her, the nurse Logan removed her breathing tube so that we could see and kiss her face. It was so nice to finally be able to see her whole face! She was so beautiful. She was awake and looking at us with such deep love in her eyes.

Courtesy of Shannon Welton

When we felt it was time, they increased her pain meds and turned off ECMO. Cora loves us so much. Derek and I cried, begging her to let go. She kept fighting to stay with us. ‘We will be together soon. You need to go home,’ we told her. Finally, she passed peacefully from my arms into the arms of our loving Savior. She was finally at peace from the pains of this world.

Jen Berryman, Doula and Photographer

We love our dear Cora. I look forward to the day we can finally embrace her. I am forever so very grateful to her for teaching me so much.”

Courtesy of Shannon Welton
Courtesy of Shannon Welton
Courtesy of Shannon Welton
Courtesy of Shannon Welton
Courtesy of Shannon Welton
Courtesy of Shannon Welton

This story was submitted to Love What Matters by Shannon Welton. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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