Sternal cleft: repair or not repair? Mother’s questions to a scientist

May 3rd, 2009 • Pourquoi ça n'arrive qu'à moi?

4 years ago, few hours after her birth, I discovered that my daughter had a sternal cleft of the upper third of the sternum*. I’ve collected all possible sources accessible to the general public and prepared an information sheet for parents like me, asking for questions not answered by their doctors: Quand une maladie rare frappe à notre porte .

At the time, the references in the articles put me on the trail of Professor Padovani, now retired surgeon of the Hopital des Enfants Malades, Necker in Paris, see Sternal cleft: Case report and review of a series of nine patients. I’ve seen him once in 2005, for 10 minutes, along with Professor Glorion who is the chief of the orthopaedic surgery and paediatric traumatology unit. It was like seeing the president – very short and straight to the point – no time to waste here.

I’ve been there three times:

• October 2005: Sternum may grow during the first years of life. Let’s see her sternum development in one year.
• November 2006: Sternum is growing slowly. Let’s see her sternum development in two years.
• May 2009: her sternal cleft is still visible, but is not one unpleasant to see. Could be worse, couldn’t it? The choices are between letting her grow up adult with a gap in her upper chest, a gap that fills with air like a frog or a bird, when she cries or laughs. Or going for a sternal cleft repair, by approximating the U-shaped sternal defect, that leaves a vertical scar. It needs to be done soon, this autumn, while her bony thorax is still compliant.

Today I feel as if everything were starting again. Alone with no answers, not knowing what decision to take. With no time to ask all the questions I wanted. Feeling like disturbing the big scientist who gave me enough time already. Many other children are waiting in the corridor to see the Professor. I have to leave.

Today I’m upset. I don’t have elements to make an informed choice. From what I understood, approximating the U-shaped sternal defect is something like opening the chest vertically, sewing bones together, and closing the chest. But nothing of this was explained properly to me. I guess because a lack of time or because I’m parent, not a doctor. This is not parents’ business. Doctors decide what to do and we, patients, have the freedom of accepting or not. But no one sits near to you and explains the state of the art in the field, reviews the variety, if any, of surgical methods for sternal cleft repair, and gives advice.

The uncomfortable position I find myself in is one of deciding a surgical intervention for aesthetic reasons on my daughter. After all, is her body, not mine. Why do I have to decide how she will prefer to live? Would she prefer to live with the defect or with a persistent scar? Will she always hide her neck, wearing longs necks and collars? How will she feel, with her naked body, when making love for the first time? These are not doctor’s matters.

If you as a scientist, drop by this post, please help the mother and explain me:

• What are the different methods for sternal cleft repair?
• Are there alternative methods that do not leave a vertical scar across neck and chest, but a horizontal scar?
• Is there any method of intervention at a later age that will allow her to participate in the decision making process?
• If this is the only method to repair, when her bones are sewn together, will the thoracic cage have the same amplitude?
• Does it hurt and how long after the intervention patients suffer?
• How long it takes to fully recover and not to be in pain?
• Will she be able to move her shoulders back fully? Will she be able to play sports?
• Are there photos that I can see of the results an intervention like this?
• Are there any testimonies of other patients on the quality of life with a sternal cleft and with a repaired sternal cleft?

*Sternal cleft is a rare congenital anomaly resulting from a fusion failure of the sternum

In the following photo from the case report Primary repair of a sternal cleft in an infant with autogenous tissues , by Sinasi Yavuzera and Murat Kara, we can appreciate a young girl before and after the intervention:

Tags: Accès à l'information, Body, Corps, Enfants, Fente Sternale, Image, Sternal Cleft

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