How Common is PTSD in Parents of Infants with Serious Heart Defects?

What you need to know

• Up to 50% of mothers and 39% of fathers of infants with single ventricle heart disease show signs of post-traumatic stress disorder (PTSD) after their child’s first heart surgery
• PTSD symptoms in parents tend to decrease over time but remain high, with 27% of mothers and 24% of fathers still showing signs at 16 months after birth
• Higher levels of anxiety and difficulty coping with their child’s illness are associated with more PTSD symptoms in parents
• Demographic factors and medical complications did not predict which parents would develop PTSD symptoms

Understanding PTSD in parents of infants with serious heart defects

Becoming a parent is often a joyous occasion, but for those whose children are born with serious heart defects, it can be an incredibly stressful and traumatic experience. A recent study looked at how common symptoms of post-traumatic stress disorder (PTSD) are in parents of infants with single ventricle heart disease - one of the most severe forms of congenital heart defects.

Single ventricle heart disease refers to a group of heart defects where one of the heart’s pumping chambers is underdeveloped or missing. These infants require multiple open-heart surgeries in their first few years of life just to survive. The stress and trauma of having a critically ill newborn, coupled with major surgeries and long hospital stays, can take a major toll on parents’ mental health.

High rates of PTSD symptoms, especially early on

The researchers surveyed 215 parents (143 mothers and 72 fathers) whose infants underwent staged surgical repair for single ventricle heart disease. They assessed parents for PTSD symptoms at three time points:

1. After the first surgery (Norwood procedure) at about 8 weeks of age
2. After the second surgery at about 6 months of age
3. At a final follow-up when the child was around 16 months old

They found strikingly high rates of probable PTSD, especially in the early months:

• After the first surgery: 50% of mothers and 39% of fathers showed signs of PTSD
• After the second surgery: 47% of mothers and 36% of fathers
• At final follow-up: 27% of mothers and 24% of fathers

While these rates decreased over time, they remained much higher than PTSD rates in the general population (around 6-8% lifetime prevalence).

What PTSD looks like in these parents

The study used a screening questionnaire to assess three main types of PTSD symptoms:

1. Intrusion - Unwanted, distressing memories, nightmares, or flashbacks about their child’s illness and treatment
2. Avoidance - Trying to avoid thinking or talking about the traumatic events, feeling detached from others
3. Hyperarousal - Being easily startled, feeling on edge, having angry outbursts, difficulty concentrating

Parents showed elevated symptoms across all three categories, but intrusion and hyperarousal symptoms were especially common. Many parents reported having flashbacks about their child’s surgeries or hospitalizations, as well as sudden physical symptoms like a racing heart when reminded of these events.

Risk factors for developing PTSD

Interestingly, demographic factors like parent education level, prenatal diagnosis of the heart defect, and length of hospital stays were not associated with PTSD symptoms. Even the number of medical complications the child experienced did not predict which parents would develop PTSD.

Instead, the strongest risk factors were:

1. Higher levels of anxiety (both situational and general tendency towards anxiety)
2. Finding it more difficult to cope with the stress of having a seriously ill child
3. Lower satisfaction with parenting
4. Fewer family resources and social support

This suggests that a parent’s internal emotional state and ability to cope are more predictive of PTSD than external circumstances related to their child’s medical condition.

Why these findings matter

PTSD in parents can have serious consequences, both for the parents themselves and for their children. Parents with PTSD may have difficulty bonding with their infant, struggle to manage the complex medical needs of their child, or develop other mental health issues like depression.

Some studies have found that parental PTSD is associated with poorer developmental outcomes in children with congenital heart disease. It may also lead to overprotective parenting and more unplanned hospital visits.

Recognizing the high prevalence of PTSD symptoms in these parents is an important first step. The study authors suggest that routine screening for anxiety and PTSD symptoms could help identify parents at risk. This would allow healthcare providers to connect parents with appropriate mental health support early on.

Supporting parents through trauma

While this study paints a concerning picture of parental mental health, it also offers hope. PTSD symptoms did tend to decrease over time for many parents. And there are effective treatments available, particularly cognitive-behavioral therapy approaches.

Some key takeaways for supporting parents of infants with critical heart defects:

• Normalize the emotional struggle. Help parents understand that anxiety, flashbacks, and other PTSD symptoms are common reactions to the trauma they’ve experienced.
• Screen for mental health issues early and often. Don’t assume that parents who seem to be coping well on the surface are okay.
• Provide education about PTSD symptoms so parents can recognize warning signs in themselves.
• Connect parents to mental health professionals familiar with medical trauma.
• Offer resources to build coping skills and reduce anxiety.
• Help parents build a support network and access family resources.
• Continue to monitor and offer support even after the acute medical crisis has passed.

By recognizing the psychological toll that caring for a critically ill infant takes on parents, medical teams can provide more holistic care to the entire family. With proper support, parents can process their trauma and be in a better position to care for their medically fragile children.

Conclusions

• PTSD symptoms are very common in parents of infants with severe congenital heart defects, affecting up to half of mothers and over a third of fathers
• While symptoms tend to improve over time, many parents still struggle with PTSD over a year after their child’s birth
• A parent’s emotional state and coping abilities are more predictive of PTSD than demographic factors or their child’s medical complications
• Screening parents for anxiety and PTSD symptoms could help identify those who need additional mental health support