For most young married couples, getting ready for their first child is exciting.
But for Courtney and Josh Hayes the experience is tinged with mourning and fear.
The pair have suffered four miscarriages in just two years – both natural conceptions and IVF.
Now, weeks away from finally welcoming their first son, they have received the devastating news that he has a debilitating heart condition, truncus arteriosus.
It means he will initially suffer from heart failure, which manifest as rapid breathing, poor feeding and failure to gain weight and grow properly.
Without surgery, damage of the blood vessels of the lung could life-threateningly restrict blood flow.
To give him the best chance at survival, Courtney and Josh have to relocate from Arizona to Philadelphia, home to some of the nation’s top fetal heart surgeons, to begin care eight weeks ahead of the birth.
And the wait is agonizing.
‘It’s a big roller coaster,’ Courtney, a 33-year-old swimming instructor, told Daily Mail Online.
Long journey: Courtney and Josh Hayes (here in December 2016) are ready to welcome their first child after four miscarriages – but have to face their baby having heart surgery on birth
Their 18-week scan revealed their son has a potentially fatal heart condition
‘I have bad days and good. It just depends on what I’m doing or what I hear. So many things trigger me.
‘Somebody telling me they’re pregnant, that triggers me. It makes me really sad because I feel like I’m missing out on the fun things of pregnancy.
‘Obviously all pregnancies have risk but most people don’t have to think or worry about their baby dying right after birth.
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‘I try to stay positive but that’s difficult. In the back of my mind it’s always there.
‘I don’t know how you prepare saying goodbye to your child.’
It is a bleak prospect to face on the heels of four losses.
Courtney started dating Josh, a physical therapist seven years ago. They had been married two years when they got pregnant for the first time.
Weeks into their first pregnancy, conceived naturally at the start of 2015, the baby’s heart inexplicably stopped beating.
Courtney then became pregnant again soon after, but despite her hormone levels rising the baby could not be found and she miscarried again.
Turning to in-vitro fertilization at the end of 2015, their results and condition looked perfect, and they conceived two healthy embryos.
Courtney started dating Josh, a physical therapist seven years ago. They had been married two years when they got pregnant for the first time. Pictured: November 2016
Their first two babies, conceived naturally, inexplicably stopped breathing early on. Their third and fourth babies conceived through IVF had an extra ninth chromosome that proved fatal. They are pictured here in August, shortly after announcing their latest pregnancy
But nine weeks later the baby’s heartbeat stopped.
They discovered – in a development that doctors described as ‘incredibly bad luck’ – that their babies had Trisomy 9 Mosaicism, a rare chromosomal issue that was unable to be detected due to not all the cells having the extra ninth chromosome.
Devastated, they decided to pursue adoption and stop structuring their lives around being as healthy as possible to conceive.
Courtney went on holiday to Lake Tahoe with her friends – drinking wine, running up and down mountains, eating a lot, and not caring about her fertility at all.
When she returned she felt strange, and recognized the symptoms: she was pregnant again.
This time the couple decided to relax as much as possible, not fearing for the worst.
However, during a full anatomy ultrasound at 18 weeks they received the news that their baby boy had a potentially fatal heart condition.
‘It was devastating,’ Courtney recalled.
‘Now I’m just in a weakened state of mind and strength.
‘I always thought of myself as strong. But after getting all the bad news and bad news and bad news over and over again, I just feel weak.
‘On my good days I feel very excited, we’re fixing up the nursery, we have so many baby clothes.
‘I do let myself go there and envision what it’s going to be like. I’ve wanted a baby for several years now and I really didn’t think it was going to happen. I can’t wait to hold him and touch his skin and see his face.’
But the bad days can be excruciating. Courtney follows a number of online support groups to learn more about truncus arteriosis, but it’s a Catch-22 situation: among all the good stories, there are posts about babies that didn’t make it.
Courtney (pictured in November 2016) decided to forget about pregnancy and went on a holiday with her girlfriends, drinking and eating and hiking. It was then that she realized she was pregnant again
WHAT IS TRUNCUS ARTERIOSIS?
Truncus arteriosis is a rare type of heart disease where a single blood vessel comes out of the right and left ventricles of the heart, instead of the normal two.
It means that too much blood will get sent to the lungs.
Initially, the Hayes’ baby will suffer from heart failure, rapid breathing, poor feeding and failure to gain weight and grow properly.
Without surgery, damage of the blood vessels of the lung could life-threateningly restrict blood flow.
‘We had a horrible New Year’s Eve,’ Courtney admits. ‘We just read about a couple of babies that had died and we just sat in silence.
‘Josh just seemed broken, I’ve never seen him like that.’
Truncus arteriosus, though uncommon, is not impossible to treat.
With the right treatment, the survival rate is high.
Fortunately for the Hayes’, Josh, a physical therapist, was born and raised just an hour away from the best center for fetal cardiology, the Children’s Hospital of Philadelphia, and plenty of his family is still there.
The couple will be able to stay with family, and Josh’s company has found him physical therapy clients in the area.
Courtney, however, will be out of work two months longer than they had planned, dealing a blow to their finances.
In a bid to cover the staggering $45,000 cost of the move, the surgery, the post-birth surgery, rehabilitative care, and future surgeries, they are raising money via GoFundMe.
It is likely they will not meet all these expenses before they have to move in late January. But the main focus for them is making sure they get there to start treatment as early as possible in case Courtney goes into labor early.
‘The doctors said to keep living life as normal as possible. The safest he will ever be is in my womb.
‘So I’ve been swimming and doing weight. It’s also important for the baby that I keep a healthy mental state,’ Courtney explained.
‘It is really difficult. We just have to stay as strong as possible.’
- To donate to Courtney and Josh, visit their GoFundMe page