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

By: Linda B

Linda B — Mon, 01 Nov 2010 00:08:39 +0000

Bonjour Je suis la maman du petit garcon qui vous a écrit il y a quelques mois. Mon fils ne s’est tjs pas fait opérer car les chirurgiens veulent attendre de voir si un cartilage se forme… Il me semble qu’il en est de même pour votre fille. Comment va t’elle ? Tenez moi au courant. Le prochain rdv a Necker est fixé le mois prochain. Cordialement L.B

By: Paulina

Paulina — Mon, 19 Jul 2010 19:52:46 +0000

Dear Margarita,

Thank you for sharing your journey with your daughter. I too just started a blog for my niece who was born July 17, 2010 with sternal cleft, in California, USA. I agree there is not much information out there. Your blog is inspiring and I hope we can remain in contact.

Sincerely, Paulina

By: pam

pam — Sat, 17 Jul 2010 16:55:21 +0000

My daughter had superior cleft sternum with median raphe and associated facial hemangiomas. She had the xyphoid process and the cleft began superior to that. She had 2 surgical repairs. The first was at 6 weeks of age and the second at 21 months. The first surgery was a temporary fix to protect her heart. The second sugery was completed by cutting her xyphoid process and ribs and approximating her sternal bars. She has a vertical surgical scar from her neck to her umbilicus because of associated ulceration present at birth that was also repaired. The incision healed well. The scar is still visible but very faint. She is now 10 years old. Her chest is still not flat but somewhat concave where the cleft was. However, she does have bony protection and there is no bulging where the cleft was (or gap that appears to fill with air like a frog as you described). She participates in all activities and sports without any difficulty including softball, basketball and gymnastics. In fact, she is quite an athlete! She makes comments at times that she does not like the appearance of her chest and that she wishes she had a normal belly button (it is more scar tissue than anything else). However, she is a very strong, confident and beautiful young lady. I feel that we made the right decision with surgery so that her heart was protected. Her cleft seems to be longer than your daughter’s so that may not be an issue for you. Aesthetically, the appearance of her chest is still not completely normal despite having the surgery, but I think it probably looks better than it would have without it. You have a beautiful daughter and I hope I have been some source of support for you.

By: How does the isolated upper sternal cleft impacts on child’s growth? / esphères identitaires

Thu, 08 Apr 2010 21:52:54 +0000

[...] then there was no need to undertake the sternal cleft repair. I have written about this issue in Sternal cleft: repair or not repair? Mother’s questions to a scientist and in Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?. However, [...]

By: Jane

Jane — Wed, 19 Aug 2009 17:15:03 +0000

Scars heal, definately if you get it done when she’s only 4 by the time she is 24 it will be barely visable. are there any health risks to not doing this? to doing the operation? its a tough decision and we really dont want to be responsible for making the wrong choice as mothers. but we can only do our best using our best judgement with the resources we have available. i would try and ask myself what would i have liked my mother to have done if it were me? – i think I would like the operation instead of the cleft.

By: Access to scientific information and support about sternal cleft: comparison of three sources / esphères identitaires

Thu, 06 Aug 2009 11:03:17 +0000

[...] explained in Sternal cleft: repair or not repair? Mother’s questions to a scientist, I’m presently looking for scientific information and support to make an informed decision [...]

By: Frances Bell

Frances Bell — Thu, 07 May 2009 18:43:00 +0000

Marga, I don’t know you but I think I know a coper when I spot one;) Enrol the best support team of friends/family that you can. Everyone needs attention – you, the child at the centre of attention and the others who’ll be anxious and feeling a bit left out. All I can say is that kids are remarkably tough and can be very young heroes in this situation. One of my children made an independent train journey with younger sib to stay with friends when we were preoccupied with older sib undergoing surgery. It turned into a great achievement for him and he became a confident independent traveller. It’s not all bad!

By: Margarita Pérez-García

Margarita Pérez-García — Tue, 05 May 2009 21:26:49 +0000

Hi Frances, thank you so much for stopping by and leaving a comment. The idea of the support team that include a psychologist is a good one. Definitely, I'm going to contact the hospital and ask if such a support team exist. I would really like to be in contact with psychologists that work in the same environment.

But I'm also extremely worried about the after surgical intervention period, one little patient suffering and asking for extra-care, competing for attention with 3 other children.

By: Frances Bell

Frances Bell — Tue, 05 May 2009 12:12:59 +0000

Hi Marga, I am not a scientist but as a mother of three adult children, one of whom had extensive surgery for cleft lip and palate and another had surgery for scoliosis, I feel great empathy for your dilemma. You are so right to fully explore the alternatives. One thing occurred to me – could you find a support team (say including a psychologist) who could help you make the decision with your daughter? ( I am assuming that the surgeons would recommend surgery if the condition was likely to be progressive and debilitating.) I know that she is very young but she may be able to engage and that would increase her confidence in the decision, whatever it is. Best wishes – I am sure you will make the wise choice – then commit to it. We can only do our best.