Shelby Grace is here!

For those of you who know my personal story, Shelby Grace was born on Monday, August 24th. She was diagnosed with SWCAH via a CVS test (the same as her older brother Jake). I had a very difficult pregnancy, but the light at the end of the tunnel has arrived and she was WELL worth the wait!

Because I was proactive with our Dr's, Shelby was started on her medicine 8 hours after she was born. The state of Florida DOES test for CAH under the PKU umbrella of tests done un the hospital just after birth. This is how we learned that Jake had this condition. We know that Shelby has a wonderful life ahead of her. I am so blessed that this little bundle of joy is here...she was meant to be born into this world for a reason. We love you Shelby!

Dexamethasone and Breastfeeding

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

My CAH Pregnancy Story (Part 1)

I have been asked by several people if I would share my experience about carrying a daughter with CAH full term, all while being on Dex (short for dexamethasone). I am more than willing to talk, e-mail, converse, answer questions to ANYONE who has to make similar decisions about the cards that they have been dealt to deal with. (Also, I need to write as a disclaimer that what you are about to read is based on decisions I have made personally and are not in any way associated with the CARES Foundation or any other organization.) I will be breaking this story up as it would probally be WAY to long for anyone to read all at one time. But if you want to contact me talk directly, please do so!

My story can begin on New Year's day when we found out we were pregnant. I KNEW that I was pregnant but my beta test came back negative, and then a week later, it was confirmed via another beta! So being that this is my third pregnancy, 2 pregnancy for me to worry about the results of a CVS, my husband and I discussed me going on dex.

I should back up the story to my 2nd pregnancy. Jake, my 1st, was born and diagnosed with CAH on day 4 of life. He is amazing and we take extremely good care of him. He has an amazing pedi-endo, and we are on top of levels every 3 months. He has olny been in the hospital 1 time with the rotovirus at 6 months, and we have had no major crisis since that day. We are VERY fortunate to have a healthy boy who is a SWCAH child.

We were not expecting to have any other children, but low and behold, Mia was conceived...and we were terrified of what we had done. Jake and Mia are just 14 months apart. So the newness of having another child was part of it, but also know what we might be up against with us being silent carriers of the CAH gene. I immediately went on the dex, but honestly, I did so because I was told to do so...I really hadn't done much research or knew my way around the CAH community as I do now. The dex was a very hard drug for my body to get used to. You adjust as one does for any type of medication. The biggest adjustments were the insomnia and the increased appetite. I would just tell my husband that could never get that FULL feeling. Very strange.

We did do a CVS test through Florida Perinatal and the first set of results told us it was a girl. Honestly, I was so sad. I had always wanted a little girl, but now I was even more worried about what the 2nd results would be. So thousands of rosery's later, we did get that call, that said she was healthy and not a carrier. I can easily remember the time and place we got the call. I stopped taking the dex immediately, but MY body crashed. I didn't realize that I was probally going through withdrawl symptons, but I slept for what seemed like a month and didn't eat very much at all.