As a clinical expert, I usually feel I can handle anything. Yet, when I see infants with clefts or craniofacial defects, I feel a little overwhelmed. I immediately try to mobilize all of my best clinical skills and personal characteristics to help the parents. And, although we all know that feeding will be a problem, we often overlook the psychological and sociological impact that is almost certain to follow.
Immediate reactions to the defect
Clefts of the lip and palate occur around the 5th and the 8th week of fetal life, respectively. Although it’s possible to see these defects on ultrasound, it’s also possible to completely overlook them. Hence, the first time the mother realizes that the baby has a disfiguring defect may be mere seconds after she has given birth.
Having worked in a labor/delivery unit, I often get a glimpse of the baby before the mother does. I’m entirely unsure what to say or do next when I spot clefts or craniofacial defects. I don’t want to react, but I certainly don’t want to avoid what is apparent to everyone.
Ongoing reactions to clefts or craniofacial defects
It’s almost impossible for friends and family not to react when they see the baby. As a result, the parents begin to dread having anyone else see the baby. They may stay home rather than go out in public. Then, they begin to experience a devastating social isolation.
The parents themselves react to the baby. Legendary researcher Marshall Klaus showed that the mother-baby relationship has a mirroring effect. How the mother responds to her baby’s appearance, how she handles, holds and feeds her baby — and how frequently she smiles at the baby — all influence the baby’s response to her.
Positive feedback, which is normally present, begins to erode when the mother reacts negatively or neutrally to her baby That’s more likely when clefts or craniofacial defects are present.
Chronic sorrow syndrome
Loss of a “perfect” child can take a big toll on parents. It’s often associated with chronic sorrow syndrome, which has been defined as “a pervasive pathological grief state, similar to depression, observed in parent of children with disabilities who are unable to achieve resolution in their grieving process.”
I can and do truthfully tell parents that their child’s defect can be skillfully repaired. In some cases, the surgical correction may be almost imperceptible.
However, even when parents have an intellectual understanding (future repair is possible, and likely very effective) they are still emotionally distraught. They are still grieving for the loss of a perfect child.
Separation and “team” consults
Infants who have clefts or craniofacial defects will be scheduled for consults with various interdisciplinary experts. Parents can become physically and emotionally drained from multiple appointments, tests, and more. The exhaustion is worse when the parents live a substantial distance from the major medical center.
Separation also occurs when the baby is hospitalized for surgical correction of the defect. I distinctly remember one infant who had five surgeries, and the parents lived about 100 miles away from the major medical center where I was working.
Bonding, attachment and general interactions can be affected because of separation, or because the parents are just plain worn out.
Psychological impact of pumping or feeding
It stunned me the first time I heard a mother say, “…and because of his cleft palate I’ve been exclusively pumping for 8 months.”
I’m about as pro-breastfeeding as anyone I know. Yet, I found myself wondering if I would have the tenacity to pump for 8 months without ever having the baby at breast.
On a brighter note, however, I’ve been overjoyed when mothers of infants with clefts or craniofacial defects say, “The only time my baby looks normal is while we’re nursing.”
Patience and active listening
I’m very confident I have the skills to help with feeding techniques. I’m less confident of my ability to patiently, and repeatedly, listen to the parents. Steeped in grief, they often take in only a fraction of my teachings.
Superior communication skills, especially active listening, is critical in these situations. When interacting with these families us a calm, reassuring voice, positive non-verbal messages, and provide written instructions.amilies.
I could talk about feeding management of clefts all day long. But I’ll first point you to my interview with:
- Leslie Turner RN IBCLC, who works full-time in a craniofacial center and talked with me about breastfeeding for infants with clefts.
- Andrew Dorough DC, who is a certified pediatric chiropractor, and discussed various craniofacial and orofacial defects.
What reactions have you witnessed or experienced when you see infants with clefts or craniofacial defects? Share your thoughts in the comments below!