Born with one of the rarest and most lethal heart conditions – the double outlet right ventricle – Phoenix Da’Vine is a living miracle.
Phoenix had to undergo two heart surgeries at just 7 months of age. She even underwent a cardiac arrest and the only way to keep her alive was placing her on life support.
Fearing that she would be spending her entire life in hospital, her mom Monique Goldring took the difficult decision of taking the little girl off life support in April 2019.
Doctors speculated that little Phoenix would live just six hours once the life support was removed but the miracle baby outlived all speculations and is still alive.
Even though the little girl has to live on oxygen 24/7 and has to take quite a bunch of medications at home.
Phoenix was born via a C-section, after her mom developed pre-eclampsia, a pregnancy complication which causes hypertension in the mother.
‘I had migraines for like a week straight and my mother was like: “You’re going to the doctor,”‘ Goldring told Daily Mail. ‘They found out I had pre-eclampsia – and I had a clean bill of health my entire pregnancy – so they decided to do a C-section then.’
Phoenix was born after a full term of pregnancy and had a healthy weight of seven pounds and three ounces.
After the surgery, the hospital staff admitted the newborn to the neonatal intensive care unit due to her extremely low oxygen saturation levels and abnormal sound of the heartbeat.
An echocardiogram was performed on Phoenix shortly after her birth and it confirmed she had a heart condition known as double outlet right ventricle (DORV).
In a normal person, the pulmonary artery connects the lungs to the right ventricle of the heart while aorta connects the left ventricle to the whole body for the supply of fresh oxygen saturated blood.
In DORV, both pulmonary artery and aorta connect to the right ventricle causing serious complications in the normal blood flow through the body of the affected individual.
According to Seattle Children hospital, there’s a one in 10,000 chance of a baby being born with this condition.
‘I was devastated and I was told that to survive she would need to have four open-heart surgeries,’ Goldring said. ‘But I knew she needed them to live.’
The first heart surgery was performed on Phoenix at the age of just 10 days in September 2018, and the second was performed in October 2018, when she was two months old.
Following the surgeries, the baby had to be hospitalized until January 2019 after which she was shifted home. Things went smooth for some time, but in March, Goldring noticed some unusual congestion in Phoenix’s nose.
One day, when her nose started bleeding uncontrollably, Goldring rushed her to Inova Fairfax Hospital in Annandale, Virginia where her regular treatment was going on.
‘Halfway there she was cranky and very fussy but eventually, she got quiet,’ the mother said. ‘She looked like she was asleep. But we get to the ER and she was completely blue.
‘I shook her arm and face, she did nothing. I screamed her name, nothing. I pulled out the car seat and rushed her into the ER and said: “My daughter’s not breathing!” They rushed her in and it felt like forever.’
Phoenix cheated death by a very close margin that day but doctors noticed that her brain was severely damaged due to lack of oxygen in her blood. She had to be put on life support for a month.
‘I prayed with my family and my friends…and one day I said: “Phoenix, if you’re tired, let me know.
” Phoenix was facing towards the TV, and she looked at me when I said that. That was confirmation for me,’ Goldring recalled the time her baby was on life care, battling death like a strong warrior.
On April 23, 2019, Phoenix was taken off life support and the doctors estimated that she’ll last six hours at most.
But the little miracle survived the six hours mark, and then six days, and then even six weeks. She remained in the hospital for a couple of months before being discharged.
‘We are definitely having a big party with family and friends and RSVPs are already at 100, we’re going to have carnival games and have piñatas and face painting and lots of food,’ Goldring said about the party.
As of now, little Phoenix is fed via a stomach tube and is on oxygen 24/7, and has to take more than a dozen medications to keep herself alive.
She is also in need of two more surgeries, a Fontan procedure and a Glenn procedure, but the Inova Fairfax has denied the procedures for potential death risk.
‘I definitely want to see if there’s someone willing to take her case on, if there’s someone’s willing to look at her records and tell me if there’s even another option because I want to save her life,’ Goldring said.