Two moms in the US face the most challenging start to life as parents following the birth of their premature baby.
The little boy was born almost four months early. He has been battling to survive and thrive in a Neonatal Intensive Care Unit (NICU). Doctors estimated he only had a 20% chance of survival when born – and he’s not out of the danger zone yet.
Erika and Justine Garcia-Santos live in Sacramento, California. They have been together for almost 15 years. They registered their partnership in 2013 (followed by a marriage ceremony last year).
Erika, 29, works as a recruiter and Justine, 32, is a Premises Technician with AT&T.
As much as she wanted to experience pregnancy, Erika always knew the journey to parenthood would be complicated.
‘I was diagnosed with PCOS [Polycystic Ovary Syndrome] when I was 18 and told I would never have children without assistance from medical professionals,’ she recalls.
‘After we had become registered domestic partners, nearly 10 years into our relationship we tried for our first baby.
‘Justine and I tried to conceive for four years. To say the least, this has been a very long, trying, and difficult journey.’
‘But it’s been well worth the obstacles and wait,’ adds wife Justine. She says she had never personally ‘wanted to feel or endure the experience of pregnancy’, but would have reconsidered that decision if it proved impossible for Erika to conceive.
Those years of trying included several canceled procedures. At first, Erika did not respond as hoped to the hormones she was given to stimulate ovulation. Finally, they were able to progress to IVF [in-vitro fertilization] treatment at the start of this year.
‘Our first IVF try in late January 2017 failed and did not result in a pregnancy. Our second try with IVF was in May 2017 and we transferred our last two embryos and luckily became pregnant!’
The women, understandably, were overjoyed at the prospect of potentially becoming parents to twins. However, at week six, they hit complications.
‘Around week six I had heavy bleeding and was rushed to the hospital,’ says Erika.
‘They did an ultrasound and found that Hendrick was still there. However they could not confirm or deny I had lost the other baby because we hadn’t done an ultrasound prior to that. I have a very strong feeling that I lost the other baby from what I had seen in the bleeding.
‘In addition, my mom’s side of the family struggles with PCOS and infertility. She has also lost a child due to premature birth before I was born.
‘I knew there was a very strong likelihood Hendrick would be premature and I prayed that we could make it to at least 26 weeks for the best chance of viability.
Going into labor early
The women tried to carry on daily life as per normal, all the time hoping the remainder of the pregnancy would go smoothly.
Then, things took another turn for the worse.
‘On 27th September I started to feel heavy pressure and cramping but since I had never been in labor I didn’t know what I was feeling was contractions,’ says Erika. ‘It was too early.
‘The next day, the cramping became stronger and more frequent. I called the advice nurse and they suggested I come down to be evaluated.
‘By the time we were five minutes from the hospital I knew I was having contractions because they were coming every three minutes and I was timing them.
‘We entered triage and weren’t seen for an hour. When I was evaluated the doctor had said I was already 6cm dilated.
‘Hendrick was head down and his water bag was bulging through my cervix. She could see his hair.
‘A neonatal doctor came in to speak with us because they said he was going to come that night at 22 weeks and six days gestation. Literally three hours from 23 weeks – the very earliest chance of viability with only 20-35% survival rate.’
Fighting to delay delivery
‘The doctor very matter-of-factly told us if Hendrick were to be born that night at 22 weeks and six days gestation their policy is to not intervene,’ recalls Erika. ‘They would hand him to us and let him pass.
‘If we held out until midnight and he was technically 23 weeks they would quickly evaluate him after birth to see if they could save him.
‘If he were to come out with gelatinous skin, too sick, or if they couldn’t intubate him, they would give him to us and let him pass.
‘They gave me a shot of steroids for Hendrick’s lung development, and they also put in an IV and started magnesium for his brain development and to slow the contractions.
‘I was also given Indocin to stop contractions and then laid flat on my back with my head tilted down and pelvis tilted up for gravity to keep him in.
‘I was on strict bed rest for almost four days and was able to get him to 23 weeks and two days gestation.’
Hendrick’s premature arrival
Hendrick was born severely prematurely on Sunday 1 October 2017. He weighed just 1lb 7.4oz (660g).
His vital organs were not yet fully developed to survive in the outside world without urgent medical attention.
Doctors explained to Erika and Justine the myriad of health problems he might potentially suffer. These include blindness, deafness, cerebal palsy and brain bleeds to mental development problems and death.
‘Luckily, and apparently very rarely, he has had no brain bleeds,’ says Erika. However, he has fought back twice from pneumonia, survived a critical and essential heart operation – to close the fetal connection between the aorta and the pulmonary artery that is normally closed by the time a baby is born. He has also been diagnosed with chronic lung disease.
His first two weeks of life were critical and he remains in a very serious condition. Doctors say he will be in the NICU until at least his original due date (26 January 2018), but his stay could run in to February.
‘He is a very feisty and active little boy’
‘Hendrick right now is stable, growing very well – almost up to 5lbs – and no longer intubated. He can hear us as he responds to loud and sudden sounds.
‘We just found out after his second eye exam that he has borderline Stage III retinopathy of prematurity with pre-Plus disease. This means he has a high probability of needing corrective laser surgery to stop the abnormal blood vessel growth.
‘We will find out next week if he’ll need the surgery and then we wait to see if he will still have his vision.
‘He’s also most likely going to come home on some type of oxygen support where we will need to be trained on how to care for him.
‘He is a very feisty and active little boy. The nurses often comment on how strong willed and physically strong he is for his age and gestation.
‘Hendrick is a fighter and proves to want to be here every day.’
Staying close to Hendrick
The challenges Erika and Justine face are unimaginable for anyone who has not been through a similar experience.
Although they don’t live very far from the hospital, Erika understandably wants to stay close by, but the hospital doesn’t have the facilities for her to stay on site. Instead, it offers trailer spots in its parking lot. She is staying there in her parents RV.
‘I just recently started to come home but it took nearly two months to feel comfortable enough to spend the night at home,’ says Erika. ‘Justine was with us for two weeks initially when she was on baby-bonding leave but has since had to return to work to save the remainder of her time off for when he is actually home from the hospital.’
‘She stays the nights at home to take care of our pets but comes to the hospital every day after work and on her days off to be with him.
‘We have support from our families and friends that means the world to us. I have taken an extended leave to be with him as much as possible but that might soon be ending. I hope to stay out on leave longer because he has still yet to bottle or breastfeed and just recently we’ve been able to hold him.’
‘We’re trying to spread happiness and find a silver lining’
To help pass the time, Erika has taken to making little outfits for Hendrick, which she creates while sat in the RV in the parking lot. She poses these above him and has been posting the photos to Instagram.
She’s also keeping a blog, so distant friends and relatives can keep track of what’s happening.
‘We’re doing a 25 Days of Bub’s First Christmas! That’s his nickname. I post pictures of him in different costumes and props made mostly of felt and backgrounds that I’ve sewn. I make everything and lay it on him during his care times and we take photos. We share it on my Instagram, Facebook, and in various NICU/Premature support groups on Facebook.
‘The photos are to help lighten the mood and lift the spirits of other NICU parents that might be struggling as well.
‘We’re trying to spread happiness and find a silver lining on a dark, heavy cloud.’
There are still some people out there who question the desire or ability of gay people to raise children. What they often fail to see is how challenging it can be for same-sex couples to become parents. Or how wanted these children are by their parents.
I ask Erika and Justine what sort of reaction they’ve had as a same-sex couple.
‘We’ve had lots of positive support being two moms,’ says Justine.
‘There have been times where people or staff have inquired about the father and at one point even assumed Hendrick’s Godfather was his biological father, which is not the case.
‘Otherwise, we have had nothing but positivity towards us. However, many of the people know our journey and know how truly loved and wanted Hendrick is,’ adds Erika.
‘Hendrick is by far the best thing to happen to us’
If they had one wish for the coming year, what would it be?
‘I’m realizing that we’re on his time and giving him all the support to develop and grow into a healthy baby boy,’ says Justine. ‘Every day is different therefore it’s hard to set realistic goals.
‘I hope he grows to be a healthy boy, strong enough to be off the support of oxygen, and is able to go home.
‘Hendrick is by far the best thing to happen to us,’ she says. ‘Even with the complications and obstacles we still have to overcome it’s definitely brought my wife and I closer together.
‘Everyday we see him make great progress and setbacks. Through it all, he’s been our little fighter and making it very clear he wants to be here with us.’