A baby central to a contentious legal case regarding an abortion was born this week with a significant and rare heart condition.
The surrogate mother, McKenna West, learned that her baby, named Gabriel, had hypoplastic left heart syndrome when she was about 20 weeks along. This congenital defect means the left side of the heart is underdeveloped and requires multiple surgeries, leading to potential lifelong health issues for survivors.
West declined the biological parents’ request to terminate the pregnancy, resulting in legal disputes across three different states.
The birth parents sought an abortion based on a clause in the surrogacy agreement that allowed for it on demand. However, West, looking for legal protection, decided to move to Texas, as indicated by Texas Attorney General Ken Paxton’s office.
“Every life matters. No woman, including me, should be forced to end the life of an unborn baby… Baby Gabriel should be given a chance to live,” West expressed in a statement.
While Gabriel’s biological parents, Nausheen Gilker and Omar Ahmed from California, currently have custody, West intends to keep fighting for Gabriel.
So, what’s hypoplastic left heart syndrome all about, and what does it mean for Gabriel?
What is hypoplastic left heart syndrome?
Hypoplastic left heart syndrome (HLHS) is a serious birth defect that results in the left side of the heart being underdeveloped.
This area includes the left ventricle, the associated valves, and the aorta. It plays a crucial role in taking oxygen-rich blood from the lungs and distributing it throughout the body.
In the United States, HLHS affects about 1 in 3,846 births each year.
What are the symptoms and possible complications of HLHS?
Newborns with HLHS may exhibit:
- Struggles with breathing
- Difficulties in feeding
- Weak pulse
- Blue, purple, or gray discoloration of the lips, skin, and nails due to a lack of oxygen (known as cyanosis)
- Cold extremities
- Lethargy or sluggishness
If untreated, infants with HLHS can experience shock and may not survive due to complications like heart failure.
How is hypoplastic left heart syndrome diagnosed?
HLHS can be identified either before or after birth. It can often be seen via ultrasound or an echocardiogram, which is an ultrasound focused specifically on the heart.
After birth, doctors base the diagnosis on visible symptoms such as breathing challenges, feeding issues, and skin coloring. They may also listen for abnormal heart sounds.
How serious is HLHS? What is life like with the condition?
Without treatment, HLHS is often fatal, with infants typically surviving only a few weeks. However, with medical intervention, around 72% of children make it to age 5. If they reach that milestone, there’s a 90% chance they will survive into adulthood. Some of the oldest survivors are in their 30s.
Children who undergo the necessary surgeries will require ongoing medical care throughout their lives.
“Although these procedures enhance circulation, the heart does not function the same as a healthy two-ventricle heart,” notes the American Heart Association. “As a result, ongoing follow-up care is crucial to monitor any related health issues.”
Even after all surgical interventions, some children may eventually need heart transplants, which come with their own set of long-term care needs, like immunosuppressant drugs to prevent rejection of the transplanted heart.
How is hypoplastic left heart syndrome treated?
In rare instances, treatment may begin while the baby is still in the womb, but it’s high-risk and requires a careful coordination of specialists, according to cardiologist Dr. Sarah Gellerter. This procedure has proved successful, but not every baby with HLHS is eligible.
Typically, three surgeries are necessary in the days or weeks after birth.
The first operation, known as the Norwood procedure, enables the right ventricle to circulate blood to the entire body instead of just to the lungs. This involves creating a new pathway for the blood flow to the body (the aorta) and a shunt to transport blood to the lungs.
At around 4 to 6 months, a second surgery, called the Glenn procedure, allows blood from the upper body (head and arms) to flow to the lungs for oxygenation.
The final operation, the Fontan procedure, takes place between the ages of 2 and 3, helping direct blood from the lower body to the lungs, allowing for a circulation pattern closer to what is regarded as “normal.”
