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Postpartum depression after child's diagnosis?

post #1 of 13
Thread Starter 
Hi all! I'm new to the site, glad to find this forum. I am a first-time mom to a toddler with Down Syndrome. (I catch myself thinking "Down Syndrome" every time I read "DS" anywhere ) I've been hoping to find other moms of special needs children who have gone through prolonged post-partum depression after learning of their child's diagnosis. It's been a tough road for me, and sometimes I feel like I must be the only one...
post #2 of 13

My child has a very different diagnosis, but hearing it when she was 5 weeks old sent me into a very painful place for... I'm not sure how long, it kind of blurs. You are not the only one to find that the grieving and the fear that come with a baby's diagnosis, piled on top of postpartum hormones, and added to the stress of becoming a mother for the first time, can be completely overwhelming. Huge hugs to you. It's very important to recognize the existance and the legitimacy of your feelings and all your reactions - this is huge, life-changing stuff, it does not get more serious or closer to your heart than this.

Have you seen a counselor who specializes in this area? It can really help a lot. How well are you hanging in now, day to day? How old is our child? My girl is 2 now, and I'm in a much better place with her diagnosis than I was last year. That said, I may have an easier time dealing with the world because my daughter's diagnosis is currently invisible. I have to worry about her getting progressively sicker and maybe dying in her 20s or 30s, but for now, no one looking at her thinks there's anything "wrong with her" so I don't face a lot of those challenges day to day.

I wish you the very best.
post #3 of 13
Thread Starter 
Thanks for the quick response. My daughter is 2 yrs old also! We live in a pretty rural area, so there aren't any counselors with this specialty. I have been to other counselors, (before and after her birth), and while I'm sure it was helpful, I wasn't sure that they could really understand what I was going through. I am also doing MUCH better than I was a year ago, too. The stress of her first year was also compounded by significant medical issues that required 2 surgeries, constant visits to pediatrician, specialists, etc. I was in a very bad place for that first year, but it has been gradually improving since then. I wish I had had the motivation to come here then--I'm sure it would have helped to reach out, but I just didn't feel like talking to anyone.

I really feel for you having to have all those "what ifs" and worries about the future hanging over your head all the time. I worry about what the future holds too, but try not to think about it too much--

post #4 of 13
We got the diagnosis prenatally. My younger daughter has a Giant Omphalocele, and will only (hopefully) have special medical needs for a few years. However, as I am prone to depression, I knew I had to be proactive. I was seen at the Maternal Fetal Medicine clinic at a large university hospital, and they have a psych team attached to the clinic. I got talk therapy there while I was pregnant and for a short while postpartum. But one of the most helpful things was, we made a plan for after Fiona would be born. I've tried the anti-depressants that are ok for the third trimester, and they didn't work for me, so we didn't even bother putting me on anything while I was pregnant. But we looked at all the pros and cons of various antidepressants and I had my doctor prescribe it for me immediately (I had the c/s in the morning, took my first dose that night!)

It is a steep curve, and you really need to make sure you have the right support available to you. If you don't, then find it. Your child needs you healthy. Are there support groups in your area?
post #5 of 13
In hindsight I had Post Partum Depression AND Diagnosis Depression (I made up that last term). I always picture it like a black veil over everything. I did talk to a counselor about the Diagnosis Depression but she would go into problem-solving mode and I spent my counseling time explaining logistics instead of working through my feelings.

We always think that having a baby will be a joyous time but when there's a special need, sometimes the joy is pushed aside by sorrow.
post #6 of 13
I know exactly how you feel. I had a very hard time with my DDs diagnosis, which came when she was is the NICU. She had both a brian injury from birth and a chromosome difference that is a lot like Down syndrome but a different chromosome. To be painfully honest, if I could have found a way to give her back I would have. I felt like all of this was just dumped on me and I didn't want any part of my life. I went on antidepressants and talked to someone, but it still took me most of her first year of life to really come to terms with it all. What helped me most was how unconditional my husband was. He never blinked at the diagnosis and loved her unconditionally from the start. He used to joke around with me asking if he would come home one day to me having run off to some far away country. It wasn't far off. I often judged myself for not being better with her, and not having this overwhelming love that would transcend all obstacles. But that wasn't how it was for me. My love and acceptance grew, it was not just born with her. I still have some hard days, especially when I wonder about her adult life. But day to day, she is super sweet and full of love and light, and a blessing to us in so many ways.
post #7 of 13
You are most definitely NOT alone!

It took 11 months for my son to get diagnosed, and those 11 months are a blur of no sleep, worry, research, dozens of dr appts, severe illnesses, surgeries...and that was just him. Also in that first year I changed jobs (got out of the military because of him and his needs), moved houses, my husband quit work to stay home with him, my oldest went through horrible behavior issues, etc. It was an incredibly stressful time.

Looking back, yes I had a version of post partum depression. Everything got easier for me once we had the diagnosis and I had something to focus my research/energies on. I had a "name" for this thing wrong with my baby. My husband hit his own depressive period in the second year, though. He was not prepared for the diagnosis, so what came as a relief to me came as a shockwave to him. It was a hard time in our family for sure.

I had a few friends that I clung to a lot, and I came here a lot to talk about the stresses. That helped a lot and got me through that time. My husband still struggles, he tends to struggle with depression even in the absence of stressors, so even though our son is 3.5 years old, my husband hasn't been able to pull himself out of the initial "bottom out". Doesn't help that we've since had another baby that has brought him own challenges (although he is thankfully healthy).

Hang in there, join us here, write it all out, every thought you have, we all understand and will be here to give you a virtual hug. Ask your daughter's specialists for recommendations to counselors, books, videos, webpages, support groups, etc. There is help out there!!
post #8 of 13

My DD's dx is different in that it came about slowly, over a series of years, rather than being so solid, so my experience is different. However, there are times when it just hits me and I get depressed. Last year her birthday was really horrid for me, but this year it was OK.

I've spent time in therapy working on how I feel about having a sn child, and how I feel about someday having a sn adult. My Dh and I have spent time in marriage counseling, and part of that was working on issues surrounding our dd and different ways we process what i going on with her and how it plays out in our relationship.

This is REALLY tough stuff. And most parents can't relate so their ability to be supportive is pretty limited. You aren't the only one, but I found my best support by seeking out professionals.
post #9 of 13
I battled depression the first 2 years of my son's life and still get bouts of it every now and again. We had the birth and then the diagnosis, lots of dr appts, another baby right before his first surgery, it was very stressful. 3 yrs after his birth(and 2 yrs after my younest's birth), I can finally see the light and feel my old self coming back. Doesn't help that I have not slept through the night in over 3 years either.
post #10 of 13
My son has DS and just turned 3.

The emotional pain I felt after learning he had DS was staggering. I went from blissfully basking in the afterglow of a beautiful home birth to wanting to die, the pain was so intense. It was very disturbing to feel rejection for my newborn.

You are not alone.
post #11 of 13
No, you are not alone and yes of course, PPD is a very common thing. Just speaking from my personal experience as a first time mother - my daughter was dx at 18 weeks gestation with pulmonary atresia intact septum and we were very encouraged to abort. I knew I might experience "hectic times" after Sophia was born, but I was completely blind sided when depression hit me. Crying, couldn't eat, felt like everyone around me was going to die because I knew Sophia's situation was so critical. Started to invision my husband's funeral, invisioned Sophia's funeral and the music I would play - crazy stuff like that. A doctor convinced me Zoloft was the answer (I had 0 history of psych previously). I listened, took the medication for 4 months and stopped. I stopped because I realized that little blue pill wasn't going to fix my child's broken heart and that I had better find a way to deal with it and accept the fact that she has a very serious medical condition. I suppose to, my hormones re-balanced themselves from giving birth, thank God. I was back to myself after that time. Was I still sad? Of course, but the irrational thoughts were gone and I was left with my new normal which included 3 open heart surgeries within the first 4 years of life, 4 caths and life-long medications such as coumadin, severe allergies and ADD . Not sure why God would intrust me with this complicated child, but I guess he sees something I don't.

That's just my story, briefly told. I wouldn't wish that time upon ANYONE and I sincerely hope that your situation improves 100%. Do whatever you need to do - therapy, pills, whatever it takes.

Take care,
post #12 of 13
My kids have some stuff that is easy to" not see" , so that has it's ositives and negatives. However, i find the worry and grieving to be an ongoing process. It hits me at times like IEP reviews,just knocks me out with sadness. I don't find many who really get it, frankly.

My DH has been my rock. You are never alone in this-this board is so helpful.
post #13 of 13
Hi there - I just wanted to comment since this hit so close to me.

My DD is 2.5 years old. We didn't know anything was "wrong" when she was born - we were expecting her to be healthy and all the ultrasounds indicated so.

Long story short, Kate's first year (actually, two years) was full of surgeries, MRI's, therapies, medical equipment and disheartening diagnoses. I literally felt like we kept getting kicked while we were down - we just kept getting bad news after bad news.

I am prone to depression - but it was always pretty minor. I had never tried meds and eventually I came out of it on my own. What I experienced after Kate was born was horrific. I would sit at home and basically cry almost all day. Any news we were given, I immediately made it into worst case scenario. She had several cardiac issues - I knew for sure it meant she was going to die. She had developmental delays - it meant she was going to never live independently, etc.

I was basically a shell of a person and was so completely NOT there for my husband (who didn't really know what to do - he tried to be supportive but I don't think he knew how to deal with this) or my son.

For me, I saw a therapist. She told me that she is not quick to recommend meds, but that the chemicals in my brain were so completely depleted by the stress that I needed to put them back in balance.

I did go on Prozac - a relatively low dose - and was astonished at the results. I paired this with 2x/month therapy and after a little while, I could actually function again. I didn't even realize how bad I was until I could look back with a much clearer head.

I just wanted you to know that you're not alone...
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