I know that this might be a common question among parents that are expecting a child with or without CAH, but are awaiting results. I am expecting a daughter with SWCAH and have learned ALOT throughout this pregnancy. I had recently contact Dr. Maria New, a world leader in research and development pertaining to CAH (she has literally dedicated her life's work to this disorder). Here was my online conversation and the valuable information that I would like to pass on to you.
Marisa's Inquiry:Good Morning Dr. New!
My name is Marisa Langford and I spoke with you in April 2009. I live in FL and my doctors at Florida Perinatal have sent all my CVS tests to Mt. Siani to you for results.
My husband and I are both silent carriers. Our 1st son has SWCAH, our 2nd daughter is not a carrier and our 3rd daughter (due August 31) has SWCAH.
I am writing in regard to a question I have about the dexamethasone and breastfeeding. I have been on dex since April 2009.
I do realize that I will have to ween myslef off of the dexamethasone, but how will that effect me breastfeeding my child as I would assume that the dex would pass to her through my breast milk. My son was started on Cortef at 4 days old and our pedi-endo, has said that our baby will start sooner as she has already been diagnosed.
My fear is that I would be over supressing her with too much medicine (my dex and her cortef) and this is why I am contacting you.
What are my choices and what do you recommend to do in this situation. I would like to breastfeed, however if I DO NOT want her over supressed with medicine. Please advise me as to how this situation is handled as I need advice. I have also cc'd Suzanne from the CARES Foundation as any advice on this topic would be wonderful to reference for other mothers in my situation too. Thank you both for your time.
Dr.New's Response:Dear Mrs. Langford,
I have the following responses to your questions:
1. I have never weaned a patient under my care who is treated with dexamethasone during the pregnancy until delivery. The patients all stop their dexamethasone treatment abruptly upon giving birth. None have reported any negative side effects from discontinuing dexamethasone treatment after birth. Logically, it would seem that weaning makes no sense, as the dose to the pregnant mother is very low. Further, the newborn's adrenals are not suppressed as the 17-hydroxyprogesterone in the affected newborn is very high, indicating the fetal adrenals are not suppressed. It would seem very unlikely that mother's adrenals would be suppressed, if the fetal adrenals are not suppressed.
2. It is unlikely that your newborn baby would be oversuppressed from dexamethasone in your breast milk, even if you continued the dexamethasone, the level of which would be waning in your blood. However, this could be monitored by measuring the 17-OHP level in your newborn. (Of course, if you discontinued the dexamethasone at birth, this would not emerge as a problem.)
I think I have the greatest experience in prenatal diagnosis and treatment, and my policies indicated under #1 and 2 have been successful. I understand that you have told my assistant, Claire Gilbert, that you suffered from dex withdrawal in a former pregnancy. Are you sure that your symptoms could be attributed to dex withdrawal?
Please do not hesitate to contact me further for questions.
Sincerely,
Maria New, MD
Maria I. New, M.D.
Professor of Pediatrics
Professor of Genetics and Genomic Sciences
Director, Adrenal Steroid Disorders Program
Mount Sinai School of Medicine
Department of Pediatrics
One Gustave L. Levy Place
Box 1198
New York, NY 10029