Mothering Magazine Sponsored Chat with Cynthia Good Mojab, MS, IBCLC, RLC, CATSM is a clinical counselor, international board certified lactation consultant, author, researcher, and speaker. Through her private practice, LifeCircle Counseling and Consulting (LLC) she offers a blend of psychological and lactation services to women and health care providers, in person and by phone.

This chat's topic: Coping with the challenges of mothering a child born with a congenital disorder or experiencing chronic health issues.

www.mothering.com
9/28/06

9 mamas in attendance

All Mothering Sponsored chats with Cynthia:
4/27/06  5/25/06  6/29/06  8/23/06  9/28/06  10/26/06

 

Webmama_Tina: so cynthia, it looks like just you and me for the moment
Cynthia_Good_Mojab: So, how are you?
Webmama_Tina: good, you? :)
Webmama_Tina: for chronic disorders and such, what kinds of things were you thinking about?
Webmama_Tina: i don't have any children with anything other than recently diagnosed eczema
Webmama_Tina: lol
Webmama_Tina: and unless you count moodiness as a chronic disorder of my nearly 6yr old, LOL!
Cynthia_Good_Mojab: Congenital disorders and chronic health issues is a very broad topic. When children are born with a health or developmental issue, it's labeled congenital" (present from birth)."
Cynthia_Good_Mojab: Chronic health issues can result from congenital disorders or develop after birth.
Cynthia_Good_Mojab: Congenital disorders include Down's syndrome, cleft lip and palate, hearing impairment from birth, club foot, etc.
Webmama_Tina: oh i see
Webmama_Tina: yeah i don't have anything like that here...well my dd had a hemangioma at birth...but its mostly gone now...not ever really been an issue either
Cynthia_Good_Mojab: Chronic health issues can develop after an accident or through exposure to environmental toxins (e.g., lead, mercury). Allergies certainly fall in the category of chronic health issues, so eczema (which is often related to allergies) would count.
Webmama_Tina: oh i see...yeah i am trying to figure out if he really does have eczema...
Cynthia_Good_Mojab: So would the Asperberger spectrum of disorders, including autism.
Webmama_Tina: i'm not entirely convinced
Webmama_Tina: its not all dry and scaley
Webmama_Tina: more like a rash
Cynthia_Good_Mojab: Skin problems can be really hard to figure out. And, mothers who are coping with children's allergies can find the process of figuring out how to live life without eating dairy, wheat, corn, ....whatever the offending food is...can need support.
Cynthia_Good_Mojab: Tina, do we have any Boards over on Mothering that address these kinds of issues? I wonder if we can rustle up anyone who might be interested in talking about this....
Webmama_Tina: hm, dunno
Webmama_Tina: i don't post on mothering very often
Webmama_Tina: yeah i'm being told by friends that i should try to eliminate dairy from my diet...that is SOOOO hard!
Webmama_Tina: not to hard to take it out of his, cuz he doesn't eat a whole lot yet
Webmama_Tina: mostly nursing still
Webmama_Tina: but wow, if i can't eat cheese!
Webmama_Tina: :(
Webmama_Tina: i posted on amity
Webmama_Tina: are you posting on mothering?
Cynthia_Good_Mojab: I just posted on Mothering
Webmama_Tina: okey dokey
Webmama_Tina: LC22 you back yet?
Webmama_Tina: guess not
Webmama_Tina: hmmm
Webmama_Tina: welllll....
Webmama_Tina: LOL
Webmama_Tina: give it some time to see if anyone shows i guess
Webmama_Tina: so you're area of expertise is all things children and babies, eh?
Cynthia_Good_Mojab: Well, Tina, an option is also to conduct this like an interview--that way there's a transcript on this topic.
Webmama_Tina: that's true
Webmama_Tina: :)
mybabyandmore: hello sorry I'm late
mybabyandmore: nap time
Webmama_Tina: hiya!
Webmama_Tina: i'm glad you made it!
Cynthia_Good_Mojab: Welcome!
Webmama_Tina: mybabyandmore do you have a child with congenital disorder or chronic health problems?
mybabyandmore: no
mybabyandmore: actually reactive airway disease
Cynthia_Good_Mojab: What kind of symptoms does your child have?
mybabyandmore: wheezing coughing
mybabyandmore: every time they get cold it goes right to their chest
mybabyandmore: colds
Cynthia_Good_Mojab: How much of your time are you spending trying to keep him/her from getting those colds? I bet that's tough to accomplish!
Webmama_Tina: welcome thefragile7393
thefragile7393: Thank you :-)
Webmama_Tina: fragile...do you have a child with health issues?
mybabyandmore: i honestly don't
mybabyandmore: i breastfeed my 19 month old
mybabyandmore: my 3 yr old has seemed to grow out of it
mybabyandmore: mostly
thefragile7393: honestly no....I'm just here learning and listening
Cynthia_Good_Mojab: So you've been mothering two children with reactive airway disease...although one seems to be doing better now.
thefragile7393: he's a healthy little dude in spite of me
mybabyandmore: y
mybabyandmore: they both get nebulizers prn
mybabyandmore: the baby more often
mybabyandmore: with albuterol
Cynthia_Good_Mojab: Do you feel like an old pro" at this point, taking things in stride, or is it a daily challenge, or a little of both or ??"
Cynthia_Good_Mojab: Thanks for joining us to listen in, the fragile7393. Do you have friends/family coping with parenting children with congenital disorders or chronic health issues?
mybabyandmore: when she is sick i feel challenged. I had asthma as a kid and I hear her and know how horrible it feels it breaks my heart
Cynthia_Good_Mojab: You can really empathize with how hard breathing difficulties can be. They can be really frightening since breathing is so important...
mybabyandmore: it hurt me to hear her trying to breathe
thefragile7393: mmm....well my SIL has a son born with severe Spina Bifida.....and of course the hospital screwed up her breastfeeding by giving pacis and bottles...so she's exclusively pumping for him
thefragile7393: I've tried to help her on that aspect....she's trying to bf more...it's been an uphill battle
Cynthia_Good_Mojab: Tina, now that we have a few Chat participants, do you want to start taking questions?
mybabyandmore: WOW that is admirable though thefragile7393 expumping takes dedication
thefragile7393: I dunno if she throws in formula here and there.....I don't talk get to talk with her much since she usually prefers to talk with my husband, her brother
thefragile7393: but the last I heard she was doing the exclusive pumping thing.....
thefragile7393: she dosn't work so she has the time" so to speak, even with an older daughter"
Cynthia_Good_Mojab: I just came back after being disconnected from the Chat. I'm not sure what I missed...I was only gone a moment, but one of my responses wasn't sent, I think.
Cynthia_Good_Mojab: Tina, are you there?
Cynthia_Good_Mojab: I think Tina is busy mothering at the moment!
Webmama_Tina: sorry!
Webmama_Tina: nak'n
Cynthia_Good_Mojab: No problem!
Webmama_Tina: don't know what i pushed
Webmama_Tina: i logged myself out somehow
Webmama_Tina: lol
Cynthia_Good_Mojab: I pushed send" earlier and was disconnected. So, it might be a glitch with the system, not you!"
Webmama_Tina: maybe
Cynthia_Good_Mojab: Does anyone have a question about today's topic of coping with the challenges of mothering children born with a congenital disorder or experiencing chronic health issues?
Cynthia_Good_Mojab: Or a comment? Or wisdom to share?
Cynthia_Good_Mojab: While I see if anyone has an answer to that question, I want to share a few resources....
Webmama_Tina: i wonder if there might be another topic that the mamas might want to discuss?
Cynthia_Good_Mojab: I'm open!
Webmama_Tina: resources are good..share away!
Webmama_Tina: i've got a squirming nursing baby on my hands here...trying to keep him happy
Cynthia_Good_Mojab: I wanted to copy and paste, Tina. Is that possible?
Webmama_Tina: yes
Webmama_Tina: you have to click the copy content button first
Webmama_Tina: see the button with 2 pieces of paper?
Webmama_Tina: oh wait
Webmama_Tina: do you mean you want to copy stuff from elsewhere?
Cynthia_Good_Mojab: I wanted to copy a url from another place and paste it into the text editor here.
Webmama_Tina: cuz that's if you want to copy stuff in the chat
Webmama_Tina: oh yes, just use CTRL V
Webmama_Tina: that will paste it
Webmama_Tina: L  C to copy
Webmama_Tina: woops
Webmama_Tina: ctrl c
Webmama_Tina: kicking baby, lol
Cynthia_Good_Mojab: A great article was just published this month....  Batha, E. Down's syndrome: She wasn't the daughter I wanted." The Independent. September 19, 2006. URL: http://news.independent.co.uk/uk/health_medical/article1619323.ece
Cynthia_Good_Mojab: A great book:  Leff, P., and Walizer, E. Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illnesses and Disabilities. Brookline, MA: Brookline Books 1994.
Cynthia_Good_Mojab: A very useful website when your child's disorder is a rare one and information is hard to find: National Organization of Rare Disorders ( www.rarediseases.org ): Provides information and support for people living with rare diseases.
Cynthia_Good_Mojab: Exceptional Parent Magazine's website ( www.eparent.com ): Provides information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.
Cynthia_Good_Mojab: A national support group for parents coping with congenital disorders and chronic health issues: Mothers United for Moral Support (MUMS) at http://www.netnet.net/mums
Cynthia_Good_Mojab: And, if breastfeeding is impacted by a congenital disorder, here are two of my publications on the topic...
Cynthia_Good_Mojab: Good Mojab, C. Good Mojab, C. Congenital disorders in the nursling. Unit 5. Lactation Consultant Series II. Schaumburg, IL: La Leche League International, 2002.
Cynthia_Good_Mojab: Good Mojab, C. Congenital disorders: Implications for breastfeeding. Leaven 2000; 35(6): 123-128.URL: http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html
Cynthia_Good_Mojab: One in 10 babies is born with a congenital disorder--with impacts that range all the way from mild to life-threatening. Many women feel very alone in their shock, grief, and daily challenges.
Cynthia_Good_Mojab: I see we have a new particpant. Welcome, lactationlady!
Webmama_Tina: hi lactationlady!
Webmama_Tina: we're just wrapping up here...
Cynthia_Good_Mojab: Breastfeeding challenges are often the first symptom noticed of a congenital disorder.
Cynthia_Good_Mojab: If lactationlady has a question, I can stay a little longer, Tina.
Cynthia_Good_Mojab: Mothering a child with a congenital disorder or chronic health issue can be an overwhelming experience at times. The stress can be so great that mothers are at risk for depression. And, since most mothers don't imagine that this kind of thing will happen..
Webmama_Tina: okey dokey
Cynthia_Good_Mojab: to them and their children, grief can be involved over the loss of the dreamed of parenting experience, the dreamed of child...
Cynthia_Good_Mojab: Since, new losses can become apparent throughout the lifespan of the child (new challenges, health set backs, new diagnoses, ...) chronic grief can be experienced.
Cynthia_Good_Mojab: I talk about the emotional side of things in the two publications about breastfeeding and congenital disorders that I listed above.
Cynthia_Good_Mojab: Given our high rate of c-sections in the US, babies are more frequently born before they are ready. This can result in acute health issues that are difficult to cope with. Out-and-out prematurity can result in many health issues for the life of the child.
Cynthia_Good_Mojab: When mothers are overwhelmed with coping with the daily challenges of health issues, it can leave little time to research and find out that they are not alone and that support and information is available.
Cynthia_Good_Mojab: Friends and family may need to be the ones to try to hunt down information and support.
Cynthia_Good_Mojab: La Leche League International maintains a database of volunteer breastfeeding counselors who have personal experience with a variety of issues, including particular congenital disorders. Local LLL Leaders, as well as mothers, can contact these specialty...
Cynthia_Good_Mojab: Leaders for been-there-done-that support.
Cynthia_Good_Mojab: Any comments or questions at this point?
Cynthia_Good_Mojab: Welcome, skye? Do you have a question about today's topic of coping with the challenges of mothering children with congenital disorders or chronic health issues?
Cynthia_Good_Mojab: Sorry, meant to type Welcome, skye!""
skye: thank you :) no, I just thought I'd wander in and see what's up
Cynthia_Good_Mojab: We've been a small group this morning--well, it's probably afternoon where you all are....
skye: morning here...
Cynthia_Good_Mojab: You must be on the west coast, too.
skye: yes, northern california in the mountains
Cynthia_Good_Mojab: I'm near Portland, Oregon.
skye: I used to live in Milwaukie
skye: milwaukee?
Webmama_Tina: yucko, just caught the baby eating dog food, lol
Cynthia_Good_Mojab: A little extra protein today!
Cynthia_Good_Mojab: Well, Tina, shall we do a last call for questions and/or comments on our topic?
skye: I hate that discovery! I think that's what spurred me to go to super high premium dog food with 'human grade' ingredients lol
Cynthia_Good_Mojab: Very wise. : )
Cynthia_Good_Mojab: All right! I guess I will sign off. My next Chat's topic is what I call Pioneer Mothering:" Coping with the challenges that come with being the first in generations to breastfeed, parent without spanking, etc. (October 26, 2006)."
Cynthia_Good_Mojab: Feel free to come join that Chat, too!
Webmama_Tina: sorry about the slow chat cynthia
Cynthia_Good_Mojab: No problem, Tina!
Webmama_Tina: see you next month!
Cynthia_Good_Mojab: Take care, everyone!
Webmama_Tina: and thankyou!
Cynthia_Good_Mojab: You're welcome!