Anyone else suffer PPD after birth of special needs baby? - Mothering Forums

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#1 of 10 Old 12-05-2003, 09:41 PM - Thread Starter
 
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I would like to hear from moms who have dealt with this--birth defects especially.

I know I'm pretty lucky that our story has ended so well (health-wise we have no lingering problems as DS's heart surgeries have been successful so far and although HN he has no developmental problems except eating) but I'm having a really hard time getting over my son's birth and the aftermath. I have a lot of bad days, I'm really negative about him (he's a handful, but a loveable one) and I just find myself so jealous and resentful of everyone who has a "normal" experience with a new baby ("normal" to me means no NICU, no serious health problems). I'm sure I would have suffered PPD anyway--I was not ready to be a mom, regardless of how ready I thought I was, and I have unresolved anxiety issues from my past that have really come back. But the shock of them taking him away from me after the birth (and then finding out) and the difficulty of taking care of him in between the surgeries when I was waiting for him to turn blue just brought it on in full--I didn't sleep at all, even when given the chance, many, many panic attacks every day, and I cried nonstop when left alone with him because I was so terrified he would just turn blue and die.

But I now find myself wanting to have another baby to "re-do" what went so badly, as if this would make me heal. I know that it would just make it worse (and I can't even imagine the same happening again, that would just destroy me). I can share our whole story if anyone wants to hear it, but that's the jist.

Anyone else go through something similar? What got (or gets)you through?

Sleepy mom of two (DS-11, DD-8), & due 3/2015. 3 lost: 9/2004, 3/2005, 3/2013.  
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#2 of 10 Old 12-06-2003, 01:23 AM
 
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I have an internet friend (and acquaintance IRL) who has three children. Her two older boys both went into the nicu immediately and stayed for a few weeks each. Honestly, I don't remember exactly why anymore. Both boys were actually healthy, no defects, just funky complications that ended them up in the nicu. : She definitely mourned the loss of the normal birth and neonate period too. When her third was born, she was a little shell-shocked I think to have her go home with her on day two...same thing happened to my sister's SIL.

I have a dd who had kidney reflux. Birth and neonate were fine up to 5 weeks, then we had two hospitalizations very close together (with my then 22 month old ds thrown into the mix) and the dx of reflux. Not quite the harrowing experience I imagine the nicu to be, but yes, I was depressed. We had surgery to await (couldn't be done until she was one year old), and the constancy of watching for signs of a kidney infection were really wearing for dh and I...so from that perspective, the waiting for the other shoe to drop, I feel your pain. And I'm so sorry. Having had a normal neonate period to compare dd's period, I know it's a totally different ball game. I always said then that I was so thankful she was my second child, because I didn't have new motheritis on top of the issues she was facing, kwim? Hang in there. See your doctor or mw and tell him/her about your depression. It takes awhile to work through it I think.

Leah
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#3 of 10 Old 12-06-2003, 01:28 AM
 
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My best friend has a dd who is now five and has gone through three surgeries to repair her defect. I can't explain the defect (I probably could at one point in time, but it has been too long and I simply don't remember) but it was pretty complex and the procedure they performed was called the Fontan procedure. That might mean something to you.

My friend didn't suffer from ppd, but I saw how the stress of living with a child with a complex, congenital heart defect wore on her. Her surgeries were at 2 weeks, 6 months and the last was finally completed a year ago when she finally reached the desired weight of 33 pounds. There was so much more stress than anyone from the outside would have realized. Just the stress of trying to keep her healthy the month before the surgeries was awful. Imagine not being able to take your active 4 year old ANYWHERE the weeks before Christmas for fear that she would catch a cold and the surgery would be postponed again.

I simply can't imagine how hard it must be for you to cope with all this and deal with depression at the same time. I wish I had advice on how to help you through this but I don't. If I were you, I would seek counseling to help you through your feelings about the birth and the experiences that followed. While none of that can ever be redone, even with the birth of another child, you can hopefully come to peace with it and learn to enjoy each new day that you are given.

If you would like to share your story, fears, concerns, etc, I would love to be a shoulder to cry on. Like I said, I have never been the mom of a child with a heart defect, but I have been the support and strength for a mom going through it, and would be glad to do it again.

If you haven't already been there, there is a board for special needs parents under the Parenting Issues board. You might consider posting this there where the moms have likely been through what you have. Please keep posting here for PPD support, but you might find solace in the posts of those who deal with the same issues and needs as you.
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#4 of 10 Old 12-06-2003, 04:26 PM - Thread Starter
 
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Yeah I've been there, and met some other moms. Thanks. Right now most of my bad days are caused by regular old lack of sleep (DS sleeps very poorly, another long story and we're working on it) and I just have no patience to deal with him--he is very HN and wouldn't let me put him down for the first 6 months, then rarely until he crawled, and now he's in full-on crazy spirited toddler mode, screams at everything and won't eat, won't nap, etc. Pick me up, put me down! All day long.

I don't think I was a rube going into this--I talked to other parents, I spent time with babies. I knew he probably wouldn't "sleep through the night" until 4-6 months.

But I didn't know it might be 1-2 years. Or longer. And that he wouldn't just not "sleep through the night" but would wake up every hour or less at 1 year and would hit himself in the head to stay awake b/c he hates sleeping so much. I didn't know some babies would scream for hours on end ("colic" couldn't possibly happen to me!) and would not be put down even for a second EVER, would sleep on me or not at all for months and months. Why don't people tell us this? Not that I could have prepared for it, but hey. His temperament alone was a shocker.

I am also resentful of the HN, maybe even more so than the heart defect. It just seems like we got way more than our share. None of the babies I ever spent time around acted like him. I talk to other parents who seem to be able to lead their normal lives without a whole lot of suffering. Yeah, new baby brings changes to the relationship, but they get to spend time with their spouses once in a while. They could go grocery shopping with the baby. I see them in the store all the time, baby happily in that stupid carseat. I didn't leave my house for 4 months except for the endless doctor appointments. And DH and I have only been alone together twice (apart from hospitalizations) when my mom watched him for a couple of hours. We don't even sleep in the same room anymore since we trade off nights sleeping with DS. It's the only way, and we've tried them all except letting him cry which I can't do, not just b/c of his heart.

And my friends have been very unsupportive--only one has a (grown) kid, and so many of them just sent emails saying they were sorry to hear of his defect. When he finally came home from the hospital they brought over some meals, but nothing since. I had one friend offer to babysit then when I asked she kept putting it off forever until I gave up. I know my life is different from theirs now, but if they were going through something similar I would make an effort to help at least. We spent 3 weeks at the hospital, then another week for the second surgery at 3 months, and no one offered to help out at all. I am resentful of this too. I know people don't know what we were going through but no one even asked if we needed anything.

My mom lives nearby (2 hours) and does come up a lot, but it isn't really any break for me because I have to pay as much attention to her as I pay to DS! (That's the way she is.) I try to sneak away but it's hard for her to deal with him. My DH is wonderful and I couldn't ask for him to do anything more than he already does. He takes DS all the time, but it isn't enough. I just have no patience and I yell at DS all the time when he fights me about everything--dressing, diapers, baths, eating etc. I know I just need to accept him for who he is but I am so resentful he's not the baby I thought I was going to have, and that (it seems) everyone else is lucky enough to have. I have trouble spending time around other moms because they just don't understand. They keep offering stupid advice like I had never thought of that before, and my boss especially keeps making suggestions about DS's sleep. When I tell her there really isn't a solution, she doesn't believe me.

My midwife gave me zoloft when DS was about 2 months old and I took it until the scrip ran out in September (50mg/day) and it has definitely been worse since then. I'm trying to find a therapist but my insurance is crappy for mental health and I'm trying to find someone I can afford and also like.

Also Jish it sounds like your friend's DD has HLHS which is about the worst heart defect you can get--that's wonderful that she is post-fontan and doing well!! (DS's defect was serious but not nearly as bad as that)

Sleepy mom of two (DS-11, DD-8), & due 3/2015. 3 lost: 9/2004, 3/2005, 3/2013.  
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#5 of 10 Old 12-07-2003, 02:29 AM
 
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Steph, hearing you describe your ds's temperment in that last post brought back so many memories for me. My ds1 was so like that. I always seemed to have the only baby on the block who wasn't happy. When I would go to my bfing support group all the other newborns and infants would lay quietly on blankets, or in arms nursing or taking in the world around them. Mine would either nurse or scream. There were times when I wondered why I even bothered to go, except I really needed the contact at that point. If my ds wasn't nursing, he was crying -- literally. It was awful. I vividly remember one afternoon after he had finally fallen asleep in my arms (the only place he would sleep) wondering if I would really be sad if he were to die of sids. It was an awful thing to think, and I did love him so much, but I was just so tired (both physically, mentally and emotionally) and I just wanted my life back. I felt a lot of guilt for those thoughts.

Are you breastfeeding? Strange question, but with my son I think that he likely had a milk allergy that I just wasn't seeing because I really didn't drink much milk. He also had a lot of ear infections that didn't follow colds, but simply came on. I really think that if I had eliminated dairy totally from my diet it might have made a huge difference. To this day he still won't drink milk. I think there is something in him that knows he shouldn't.

Mothering is so hard, especially when life deals you a hand you haven't prepared for. Please get that script refilled so you can start on the road to recovery.

BTW, I know that her defect wasn't HLHS. It was bad, but it wasn't quite that bad. I'm going to have to ask my friend now exactly what it was again, cause it's bugging me. She was missing something and they had to rebuild a lot to make her heart correctly functional. It looks nothing like a normal heart, but it works for her and that's what matters most.

Please, keep venting here. Sometimes just getting it out on something tangeble makes it somewhat better. I hope you can find a good therapist soon. My heart truly goes out to you.
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#6 of 10 Old 12-07-2003, 04:46 AM
 
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First of all I would say if the zoloft helped get more. I have always wondered what qualifies as PPD in situations like this where life just sorta sucks. I was in a deep dark placeafter dd was born. But it wasn't just some hormonal roller coster. my perfect pregnancy and birth went horribly wrong and they wisked dd away to the NICU ad I had no idea what to expect and noone came to get me and then they implyed that I didn't care about her because I didn't page anyone to get me and take me up there(who knew : ) After a week in the NICU (for no good reason but ince they go up there it is like they own them and you have to fight to get them back) Once we got home dd was completely unaffectionate. She would gulp down meals and then demand to be put down. She hated beinghelp and touched. refused to smile or laugh until she was well over 4 months and wouldn't make eye contact with me for a very long time (she is 7 and still has trouble making eye contact with me). turns out she has Sensory Integration dysfunction which is why she hated being touched as a baby. I remember hating people who had happy lovey babies and who had good births and remember wanting to have another one so that I could get it right. Of course when I finally did get pregnant I was terrified that everything would go wrong. It helped to get educated and expect the worst. i toured the NICU and got copies of thier polocies ahead of time, talked to the nurses, got financal aid papers (our first experiance was without insurance or medicaid, $25,000 with 1% intrest compounded monthly as if the birth and first week wasn't traumatic enough) and that helped alliviate some of my fears, empowered me to demand good care for my child and to know I culd leave with her if I didn't get it. In the end that birth was pretty good and we had her at home but it didn't heal anything or replace anything or any of that. The pain from madelines birth did dull over time but I still grieve the loss of those first moments. that first week that she was in the hopital. those first months where we didn't know what to do with each other. I did suffer from depression but who wouldn't? I have almost no memories of leaving the house. I probably didn't get out much.

I can't even begin to imagine the depths of your pain or the stress you under right now. You have every right to feel the way you do and it isn't fair that you have to shoulder all of this. I wish you peace. and rest. and health to your sweet boy. and to you.
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The truest answer to violence is love. The truest answer to death is life. The only prevention for violence is for the heart to have no violence within it.  We cannot prevent evil through any system devised by mankind. But we can grapple with evil and defeat it, but only with love—real love.

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#7 of 10 Old 12-07-2003, 01:49 PM - Thread Starter
 
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Thanks again. What a horrible experience for you lilyka. I feel like I should feel lucky because in so many ways it hasn't been as bad as it could have been--I had one nurse that cared so much about us she kept running down to the NICU to check on him for us that first night when I couldn't go. And our insurance covered all but our deductable, and although we had to pay the deductable for 2 years since he was in the hospital over new year's, and had to borrow money from friends, we still have our DSL LOL.

I've also wondered if DS doesn't have SI--he literally needs to be touched all the time. If he's on the floor playing I have to be RIGHT THERE even now, to reassure him. Also, he has a lot of trouble eating. He didn't start even tasting solids until 11 months and has just recently started putting some things in his mouth to taste them. He never puts toys or teething rings in his mouth. probably some oral aversion due to his intubations, hard to tell.

I do breastfeed, but I never developed a full milk supply exclusively pumping for the first 6 weeks or so. DS latched on pretty well once he was healthy enough, but it was too late. It's a very long story, but I couldn't do the kind of "marathon nursing" that builds supply because he had to eat a certain amount to keep his heart shunt open and I didn't have that much. Not being able to EBF contributed TONS to my depression. I cried every time I pumped and got 1/2 an ounce. I tried every herb, took domperidone for about 9 months (recently stopped it and am just letting him comfort nurse). I rented the special babyweigh scale to determine how much he was getting, saw 3 different LCs, and I now know enough about BFing to become an LC myself. It sickened me to give him formula. I saw this as a symbol of my failure as a mother. My body failed him. It took a long time for me to give up on EBF, maybe 6 months?

Anyway, after his second surgery at 3 months he started refusing his bottles and screaming with every feed, so we had to switch him to the hypoallergenic formula and I gave up dairy. This helped a lot with feeding, but not with his general HN behavior. We switched back to the dairy formula around 9 months and he's done OK with it. I eat dairy now but don't drink milk as that seems to make it worse (I tried giving him yogurt and he screamed for 24 hours).

And if not HLHS, the other defects that require that 3-surgery procedure are Tricuspid atresia I think, or HRHS (small right heart?) Sounds like a missing valve. Still more severe than ours--we had a BT shunt at 2 weeks old then full open heart repair at 3 months. It was the period in between that was the worst because they were unable to put a big enough shunt in so he would outgrow it quickly and the only way we would know is when he started to turn blue. So I made it my mission to not let him cry ever, ever, ever. I had a panic attack whenever he cried because I was sure that would be it, he would turn blue and was this the time to call 911 or not?

It didn't help that in those first weeks before I really understood what was wrong with him I read of several deaths on a heart defects internet board, of babies the same age as mine (but with different, more severe defects like HLHS) and one especially just freaked me out. This baby just turned blue and died while eating in his dad's arms. So feeding became even more painful for me. He didn't like taking bottles from me, but he had to have them, so I would just shake whenever I fed him. I'm sure that didn't help our BF relationship, since I was so freaked out when he did that too. (Although now he LOVES to nurse, especially all night long. He just doesn't get anything)

What really gets me mad are the people who had pretty easy births, no complications, in a hospital but moan about how it just wasn't "good enough" that they have to have the "perfect birth" next time (i.e. midwife, homebirth, birth center, etc.) They have NO IDEA how bad it can be. None. I just have no sympathy for people who had slightly complicated births. C-section, boo hoo. Did they have to slice your baby open and jam tubes down his throat? NO? Then I'd say your birth was pretty good. Sorry, I am just angry about this. And I would love to have that midwife birth center birth but now that I'm high risk no regular OB would even touch me, let alone a midwife. My OB/midwife practice has already referred me to the perinatologist for any future pregnancies. Gee, thanks.

And I waited a lot longer than I should have to talk to my docs about PPD because I thought it was just stress, and my behavior was to be expected in my situation. But when I went about two weeks without sleeping at all, and lost 30lbs in one month because I never ate, and started with the intrusive thoughts esp. when driving him to doctors appointments (if I just drove into that tree he wouldn't need surgery, and I could stop worrying all the time) and while bathing him in our tub (he hated taking a bath by himself) that if I just let go of him he wouldn't have to suffer anymore, I took that internet test and scored really high. That's when it stops being "life sucks" and becomes PPD I think.

Now I'm having intrusive thoughts again, which I haven't had for a while. They're not about harming him anymore though really, but more about myself and how much better off he would be with just DH. I know I'm not going to do anything, but I just hate feeling this way.

Thanks for listening everyone.

Sleepy mom of two (DS-11, DD-8), & due 3/2015. 3 lost: 9/2004, 3/2005, 3/2013.  
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#8 of 10 Old 12-09-2003, 02:12 AM
 
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Sleepymama, my daughter has no birth defects and no physical problems except for lots of allergies, so I know my situation in no way compares to yours. Still, the lack of sleep got to me in much the same way. My dd also cried a LOT as a baby and is high needs/spirited/demanding/exhausting. There was just no middle ground when she was a baby, we had to carry, bounce, or nurse much of the time. She didn't sleep well at all till we night weaned. There is still not too much middle ground when she wants something. She is persistent with a capital "P"! She still loathes going to sleep and will often flail or hit or sing or anything to keep herself awake (she's almost 3). I felt really let down because I went the whole AP mile and my baby still wasn't content. I did EVERYTHING you were supposed to do to be a "perfect" AP mom. I read so many books, tried so many things. I wore myself down to a nub, slid into depression, etc. Why didn't anyone understand what I was going through? Oh yeah, because I thought I was supposed to love it all so I convinced everyone, including MYSELF, that life was fabulous. I kept the charade up for 19 months before I cracked under sleep deprivation and all the rest. I finally realize that when you have a spirited child there is NO BOOK that can solve your challenges, there is NO ONE who understands except other people with spirited kids, and there is generally not a lot of understanding for how damned hard mothering can be. I can't even imagine how you could add birth defects on top of that and NOT have PPD! I feel for you, truly.

I have also had those feelings of thinking everyone would just be better off without me. Then I think, what is the worst thing that could happen to my daughter - and the answer is her having to grow up without her mother. Not to mention that imagining my husband trying to do all this on own is a really scary thought, LOL!

I don't know why there isn't more support for mothers. I truly do NOT understand. I am a capable and intelligent woman, but this is so hard. So often I really think that I must be missing some vital gene that makes it so much easier for other people.

I'm a real ray of sunshine, huh? Sorry

I am sending you hugs and warm wishes for a massage or a shopping spree to buy some nice things for yourself. You deserve it!!!!!

Carol
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#9 of 10 Old 12-09-2003, 10:12 PM - Thread Starter
 
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I know! I had no idea it was so hard. I mean, I am ABD (all but dissertation) on my Ph.D. and I think getting 5 Ph.Ds is easier than raising one spirited kid. You can take a night off from school, but not the kid. Also, you don't have to hold the books while you go to the bathroom.

That is exactly how I feel--I'm missing some gene that makes me know how to do this. It doesn't help that DS is so unpredictable that he has NO routine and I still don't know what he wants at any given time. We're trying to teach him to sign so he can start telling us in ways other than screaming. But he never naps at the same time, never eats at the same time, and never does anything the same two days in a row. Getting him to eat anything has been so hard because he's so unpredictable. Before he was born everyone told me that it would take "a couple of weeks" to figure out what his different cries meant. Excuse me? Different cries? They all sound the same to me--PO'd!! I still never know what he wants and he's almost a year old!!

I kwym about persistence-- we call our DS "Professor Persistence" because he is also SOOO persistent even so young. He just doesn't give up on things, especially letting me know he's mad in the car or going for something he's not supposed to have. In the car he screams until he pukes then screams some more. He will not stop until I stop the car and pick him up. I actually turned the seat around when he was 10.5 months old (and 20 lbs) because I just couldn't take it anymore. I figured driving half-turned around with my hand patting him was less safe than turning the seat around early. It has been slightly better since--he can see me and will sometimes calm down if I pat him or bang the roof of the car.

I sometimes wonder if I was a really neglectful mother in a previous life or something, that that is why I was given this baby who is worth 4 babies in terms of attention needed.

The thing is that he behaves better for other people, like at the babysitter's he is really good. Yeah he needs to be held a lot of the time, but she says he never whines or cries. She doesn't mind holding him and he'll let just about anyone hold him. He's a little social butterfly. He'll even sleep in a bed for her for naps. Not for mom though, thanks.

My birthday is tomorrow and DH said he got me something cool and I said "um, spa week in hawaii??" Unfortunately, no. Besides, I'd feel so bad even if we could afford that! DH would have to take care of DS all week by himself (and he's too much for one parent alone!!) DH already watches him the whole time he's not at work.

And yeah, AP has been so beneficial for him (wearing him saved his life, I'm fairly sure, since I could keep him calm enough to keep the heart relaxed and blood getting oxygen--his peds cardiologist was constantly shocked at how well he was doing, considering the severity of his defect) but also sooooo hard. IMO APing a baby who is strapped to a board in a hospital crib because he has a pressure bandage on his leg and can't eat b/c he's going into surgery and can't breathe b/c his pulmonary valve is basically nonfunctional and has an oxygen mask and is still screaming his fool head off b/c he is scared and wants to be held is the ultimate test. How can you do this? You ignore the nurse and climb into the crib as much as you can and hold him close.. That is a night I'll never forget, for sure.

Sleepy mom of two (DS-11, DD-8), & due 3/2015. 3 lost: 9/2004, 3/2005, 3/2013.  
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#10 of 10 Old 12-10-2003, 01:04 AM
 
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Originally posted by Sleepymama
[B]The thing is that he behaves better for other people, like at the babysitter's he is really good. [B]
Tell me about it! DD is well-mannered around everyone except those she feels comfortable with. Which means DH and myself, also she's a little bit of a pill with my parents b/c she's used to them. But mostly she's fine with anyone but us. That's part of why I think there must be something wrong with me, because she clearly knows exactly how to behave nicely with everyone else, but chooses not to with me. Why? I mean, it's true I'm not the greatest mom these days, but when she was younger I did everything right and she was still not content. Oh well, guess that is just life. I shouldn't complain when DD is in perfect health, I know, when there are people out there whose children have been through so much more. But it sure is confusing...

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