Grow Hope: Dream a Little Dream of Me

“The nurses and doctors were kind and told me what to expect after my son was born. But nothing can prepare you for the moment when you first realize you will not be able to hold your newborn,” Marisol Castano, a self-assured and intelligent woman with bright eyes and cascading curls shared while sitting in a Cardiology exam room at Connecticut Children’s.

From the moment Marisol confirmed she was pregnant, she began dreaming of all the many wonderful “Firsts” that would soon signal the start of her new life: her new identity as a first-time mom; a first child; their first sight; baby’s first cry; and most exciting of all, the first time she would be able to hold her baby. Marisol was counting down the days until her perfect little dream arrived.

But at her routine 20-week ultrasound visit, her physician detected an abnormality in the baby. Just like that, Marisol learned her dreams were about to change.

“The second my doctor told me, my heart dropped. I could feel it in the pit of my stomach. This was serious, even if I didn’t fully know the extent of it at the time,” she says.

The diagnosis? Transposition of the Great Arteries. More commonly referred to as TGA, it is a critical congenital defect where the pulmonary artery and aorta do not develop in their proper locations – they are switched — making it impossible for blood to oxygenate or flow to other areas of the body. Babies born with this condition who do not receive surgically corrective intervention die.

“The uncertainty is what is most nerve racking,” Marisol says. “It’s not knowing how things are going to turn out, what I have to do as a parent and how my baby is going to survive.”

Marisol and her obstetrics team moved quickly to find just the right care for Baby Casado. Because she and her family live in Danbury, she could choose from a variety of internationally renowned Connecticut and New York City institutions when selecting the best pediatric cardiovascular care. Ultimately, she concluded Connecticut Children’s led the pack in offering both quality patient clinical care and family support.

“I lived over an hour away from all the hospitals I visited,” Marisol recalls. “One of the determining factors was that Connecticut Children’s enabled me to stay by my child’s side – it was the only one that had overnight rooms in the Pediatric Intensive Care Unit (PICU) for parents. I knew Connecticut Children’s would enable me to get the self-care I needed in order to stay healthy and strong for my baby without having to compromise my ability to be at his side whenever and for however long I wanted.”

Marisol was followed prenatally by Dr. Alicia Wang, a Connecticut Children’s fetal cardiologist, for the remainder of the pregnancy.

“By making a diagnosis before a baby is born, we are able to anticipate the needs of a baby with congenital heart disease to ensure the best outcome possible. We were able to review the anatomy as well as short and long term expectations with the family long before delivery. In addition, Ms.  Castano was able to meet with our surgeon as well to ask details about his anticipated surgery and recovery.  Joseph was delivered in a place where immediate intervention was available to keep him safe.  With coordination between the obstetrician, labor and delivery team and neonatal ICU, there was no delay in communication and treatment once he was born.  Everyone was prepared and on the same page.  Here at Connecticut Children’s, our entire fetal cardiology team is absolutely dedicated to providing the best possible care for the entire family.”

Peace was short lived, however. Soon another complication arose – pre-eclampsia – altering another of Marisol’s “first” visions: labor and delivery.

At 37 weeks she was induced and her nerve racking uncertainty swelled.

A Precious Gift

Marisol and Joseph after surgeryOn September 26, 2016, Joseph was born — five days before Marisol’s birthday!

But there would be little time for celebrating. Immediately Joseph, coming in at 6 pounds and 12 ounces, was whisked into the Neonatal Intensive Care Unit and preparations for his heart surgery began.

Dr. Frederic Bernstein, cardiologist at Connecticut Children’s, was the first to surgically address Joseph’s needs. At just three days old, he underwent balloon atrial septostomy — a common but imperative procedure in babies with TGA.

“The reason for this procedure is to enlarge the foramen ovale [the hole between the heart’s two atriums] and allow blood from both sides to mix together so the body can receive oxygen-rich blood,” Dr. Bernstein explains. “For Joseph, this procedure acted as the preparatory procedure before his more extensive surgery could take place.”

Two days later and on his mother’s birthday, Joseph was wheeled into the OR.

“All you can think about and hope for is that he will survive,” Marisol says. “The days leading up to it [heart surgery], all I wanted was to hold him and I was very sad that I couldn’t, even though I was aware of the sound reasons why.”

Under normal conditions, a mother’s first instinct to hold her child is encouraged. In fact, the bonding and healing benefits to both mother and baby in skin-to-skin contact have been well-documented by the NIH and are put into practice in hospitals nationwide, Connecticut Children’s included.

Knowing that Marisol needed just as much care and healing as her young baby, the cardiology and PICU teams devised a plan to give Marisol a birthday gift she will never forget.

“The day before Joseph’s surgery, some of the nurses came up to me and said, ‘We want to give you your birthday gift now.’ They then sat me down and handed me Joseph – he was connected to tubes and they positioned me so I could cradle him safely, but I was able to do it. I was able to hold my baby,” she recounts, tears in her eyes. “I will always be grateful to Connecticut Children’s for that.”

Raising Hope

Two and a half years after his procedures days after birth, and one year after Dr. Bernstein performed the balloon angioplasty of his pulmonary artery – a procedure ensuring he will never need another heart surgery – Dr. Hank Leopold, another Connecticut Children’s cardiologist, gave Joseph Casado the “all clear for one full year” at Joseph’s weekly monitoring visit at Connecticut Children’s Cardiovascular Services in Danbury.

“We love Dr. Leopold!” Marisol says.

Since Joseph’s balloon angioplasty, his growth and stabilization has been monitored by Dr. Leopold who visits Fairfield County-area patients at Connecticut Children’s satellite location in Danbury.

“He knows how to make Joseph feel comfortable and can always get him to smile,” Marisol says. “As a mom of a child who will need regular follow up appointments for the rest of his life, an already stressful situation can be compounded when adding a long commute. Being able to see Dr. Leopold in Danbury makes an already stressful day just a little easier. That is all you can ask for.”

Looking at her busy and sturdy little boy climbing onto her lap, with curly hair and bright eyes like his mother, an on-looker would never guess he has a congenital heart condition.

“To me, he is the embodiment of hope. He inspires me and everyone around us, every day,” Marisol says, wrapping her arms around Joseph in a soft hug. “Every time I look at him and remember what we went through, I also remember what holding onto hope can do.”

Learn more about Connecticut Children’s Cardiology & Cardiac Surgery services >

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