Congenital Cleft Lip and Cleft Palate

Cleft lips are not unheard of. However, little did I know that there are many more implications then just looks. I got to understand more about this birth defect after visiting one of my clients at the hospital.

What is a Cleft Lip?

Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside the mother. Clefting occurs when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.

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A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. This separation often extends beyond the base of the nose and includes the bones of the upper jaw and/ or upper gum. A cleft palate is a split or opening in the roof or the mouth, which can involve the hard palate (the bony front portion of the roof of the mouth), and/or the soft palate (the soft back portion of the roof of the mouth). Cleft lip and cleft palate can occur on one or both sides of the mouth. As the lip and the palate develop separately, it is possible to have a cleft lip without a cleft palate, a cleft palate without a cleft lip, or both.

What is a Cleft Palate

The presence of cleft palate has various implications for children in their social interactions, particularly on their ability to communicate effectively and on their facial appearance with or without involvement of the lip. Mid-facial skeletal growth may also be affected by the surgical repair of the palate. The treatment plan focuses on two areas: speech development and facial growth. Speech development is paramount in the appropriate management of cleft palate.

Many surgical techniques and modifications have been advocated to improve functional outcome and aesthetic results. The most controversial issue in the management of cleft palate are the timings of surgical intervention, speech development after various surgical procedures, and the effects of surgery on facial growth. The major goals of surgical intervention are normal speech, minimising growth disturbances, and establishing a competent velopharyngeal sphincter.

The story of baby Ethan

Baby Ethan was born with cleft palate. However, the condition was discovered only when he was about 2 months old. He had a hard time latching on and milk somehow always spilled out from his nose. That’s when his parents found themselves at wits’ end. I remember vividly when I first visited about 6 months back, there’s a feeding tube inserted into one of his nostrils, due to a hole in the middle of his palate, it makes oral intake and swallowing very uncomfortable for baby Ethan. 2 weeks ago, he was admitted to the hospital for another surgical procedure – Percutaneous Endoscopic Gastrostomy (PEG).

Percutaneous endoscopic gastrostomy is a procedure that allows nutritional support for patients who cannot take food orally. Percutaneous endoscopic gastrostomy involves placement of a tube through the abdominal wall and into the stomach through which nutritional liquids can be infused. This serves as a backup plan to make sure that he gets his fluids and nutrition directly into the stomach as he receives his palate repair treatment in 2 months’ time.

It pains my heart to see baby Ethan crying in frustration. His parents tried comforting him yet they did know what to do to lessen his pain. Though he has done 2 surgeries till date, this is just the beginning. There will be a couple more surgeries to be done to ensure that his palate is totally treated and speech development will not be affected.

Costs involved in correcting Cleft Lips and Palates

It requires long-term management depending on the severity and type of the deformity. The management can be categorised as such:

  • Pre-surgical orthodontic preparation at birth – Nasoalveolor Moulding (NAM)
  • Lip surgery performed at 3- 6 months old
  • Palatal closure performed at 6-12 months old
  • Speech surgery for velopharyngeal insufficiency performed at 5 years old
  • Alveolar bone grafting performed at 8-11 years old
  • Maxillary advancement performed at 15-16 years old
  • Secondary soft tissue surgery and/or rhinoplasty performed at 18 years old

Total cost of the treatment:

  •  Nasogastric Tube Feeding Procedure: $2,000
  • Percutaneous Endoscopic Gastrostomy Surgery(warded for 5 nights in KKH’s C ward):      $13,000
  • Palate Repair Treatment: approx. $10,000
  • Unpaid Childcare Leaves: 1.5 months since
  • Heartaches: Infinite

From my experience, I realised that the last thing you want to worry about when you and your baby are affected by this congenital defect is cost. Lucky for Ethan’s parents they got adequate cover the moment they were expecting.

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