The Profound Benefits of Prenatal Diagnosis in the Quality of Life and Care of Clefts.

Journal of Craniofacial Surgery 5/2011;22;3:854-858

Spiros A. Lazarou, M.D.

Chief, Craniomaxillofacial Surgery: Hygeia Hospital
Chief, Pediatric Plastic & Craniomaxillofacial Surgery: Iaso Pediatric Hospital
Asst Chief, Plastic Surgery: Hygeia Hospital
Cosultant, Pediatric Plastic & Craniomaxillofacial Surgery: Iaso, Miterra & Lito Maternity Hospitals

 Kokinara 40, Kifisia, 14562 Greece, +30 210 8015926; +30 6944536821

Prenatal Diagnosis of Clefts has had a profound benefit in the care of these children.  The shock of the surprise appearance, especially the complete bilateral cleft with the protruding premaxilla, was a profoundly disrupting and stressful experience for the family.  Prenatal diagnosis, especially when coupled with the option of neonatal surgery, allows calm discussion with the family and a well thought treatment plan with multiple options that can be implemented at birth.  With proper consultation and some before and after photos parents are put at significant ease.  Most are enthusiastic about immediate neonatal repair, which is done within the first week of birth.  Additional benefits of this include molding of the premaxilla in preparation for closure of the alveolus cleft with calcium bone substitutes obviating presurgical orthopedics. Besides going home with a normal looking child that can even breast feed, the family does not have to be disrupted again with another visit for this surgery at 3 months. Complete unilateral and bilateral clefts can be successfully treated for the most part with 2 surgeries within 6 months of life.

Prior to the advent of prenatal diagnosis of clefts the birth of a child with cleft lip and palate, particularly a complete bilateral cleft with a seriously protruding premaxilla, was a rather shocking event for the family as well as the staff.  The dreams and hopes of the family are shattered rather abruptly.  Tenuous relationships are stressed and simmering family problems come to the fore.  In my experience of over 800 clefts this has not rarely led to fierce family feuds and even divorce.

In the Greek culture and language the person is identified with the face as the word for both (prosopo/προσωπο) is the same and the significance of a normal face to personhood cannot be overestimated.  Offering immediate neonatal cleft lip repair to the family went a long way to alleviate the initial stress.  The child could feed better, even breast feed and went home quicker and looking normal.

Nevertheless, the advent of prenatal diagnosis has given us even further significant advantages.  The trauma of the diagnosis on the one hand was moved forward 2-3 months but without the visual, and the careful handling by the diagnosing physician, the shock is significantly ameliorated.  The immediate referral of the family to myself for discussion, something I arrange as soon as possible, enables a calm conversation with rational discussion of the cleft and possible treatment plan that includes the option of immediate neonatal reconstruction.  The before and after photographs I show them have a powerful impact as the results we achieve today have dramatically improved due to highly specialized care.

It is important to know that the cleft itself is not a sickness and very infrequently associated with anything serious.  The latter is often visible before the cleft.

Almost without exception the parents are enthusiastic about immediate surgical repair of the lip.  Having discussed the details of this beforehand there is a coherent and well thought out plan.  Every detail of the cleft is not known until birth and it is not necessary.  If the child is well and the neonatologists permit us, which is usually the case, the child goes to a preplanned surgery.  If there is only a cleft lip then treatment has finished and the child goes home to a happy family that does not have to come back for anything other than follow up.  If the child has a cleft palate as well then the family returns at 6 months for the palate surgery.

Now it is a given that these children are under the care of an entire team of specialists that includes a speech therapist, orthodontist and otolaryngologist among others.  Increasingly fewer children require secondary surgery for speech or autologous bone grafting, or suffer from fistulas and even fewer require Lefortes.  In short the quality of life of these children has dramatically increased.

In summary, prenatal diagnosis of cleft lip and palate has had a profound influence in diminishing family stress, developing an organized treatment plan, properly planning neonatal surgery as labor begins in addition to the benefits of neonatal surgery which include further stress relief, earlier feeding, breast feeding, diminished stay and as trips to the hospital and preparation of the alveolus for its repair and completing the main compοnents of the cleft – lip, palate, alveolus.

(1) Lazarou SA, Contodimos GB, Gkegkes ID Correction of Alveolar Clefts With Calcium Bone Substitutes. Journal of Craniofacial Surgery 5/2011;22;3:854-858