HELLP and milk supply...my story

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

HELLP and milk supply...my story

Postby ChunkyMonkey » Fri May 25, 2012 04:03 pm

Hello, I am so glad that I found this forum. I had by baby girl in January at 33 weeks due to HELLP. I had problems with my feet swelling starting around 30 weeks. I then gained ~8 lbs between 31-33 weeks, but when I went in for my 33 week appointment on a Tuesday there was no protein in my urine and my bp was normal (120/70). That Thursday night I started having back pains and nausea. I wasn't too concerned since everything was normal on Tuesday. I called the Dr Friday morning, when the back pain was becoming unbearable, and they had me come in to triage. When I got to the hospital my blood pressure kept climbing, my labs showed my platelets were dropping (I think ~74k) and they told me I'd have to have to deliver right away due to HELLP. Within 3 hours of getting to the hospital my daughter was born via emergency c-section. I was on mag sulfate for 24 hours after her birth, my platelet count continued to drop until the next day before climbing again. I spent 5 days in the hospital and left without needing any bp meds. Five months later I'm feeling pretty good. My daughter spent 21 days in the NICU learning how to eat and gaining weight. Thankfully, she never had to be on oxygen or had other complications. She is doing wonderfully now and is a little chunky monkey:)

The one thing about the whole HELLP experience that bothers me more than anything is my milk supply was awful. I started pumping in the recovery room and after getting a little colostrum with the first pump I got basically nothing for 5 days. I then started getting maybe 5 cc each pump and it increased a little in the coming weeks, but the most I produced in a single day was ~6oz. I tried all the suggestions for increasing milk supply including domperidone. In the end I kept at it for 4 months before stopping. I kind of felt like if I could give her breastmilk it might make for her being born too early. The doctors and lactation consultants all attribute it to being so sick. I feel so cheated, I got a crummy birth experience and then I had to deal with milk supply issues. I know in the grand scheme of things a very low milk supply is pretty minor considering all my daughter and I have been through, but it still makes me so mad its like my body just completely gave up on my daughter.

So I guess my question is has anyone else had such low milk supply due to HELLP/preeclampsia? and did you have better luck with milk supply in a subsequent pregnancy (with or without HELLP/preeclampsia)?
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Re: HELLP and milk supply...my story

Postby tree » Fri May 25, 2012 08:49 pm

Hello and welcome to the forums. I am sorry that you had to find us here.
Your birth story sounds very similar to mine. I also had HELLP without having high BPs or protein before I got really sick. My daughter spent two weeks in the NICU for feeding and growing.
I struggled terribly with nursing and pumping after delivery. I remember getting so excited about getting 5 or 10 ccs from the pump, and I topped out at a few oz per day. I tried natural supplements (terrible side effects) and reglan, found out I had retained placenta, had it removed, and NOTHING helped. We did the nurse, bottle, pump routine for a few months anyway. I felt awful bringing a pre-term baby into this world with a family history of asthma and GI problems and not giving her more than a few oz of breast milk. The guilt was miserable, and I beat the heck out of myself for months. It is really hard to come to terms with formula and bottles after having your heart set on nursing. In the end, I was very glad to live in a place and time with clean water and high quality baby formula. I stopped nursing and pumping when I realized that she was spending ALL of her waking time eating, and it looked like she wanted so spend some more time exploring a bit.

I understand feeling cheated by the whole thing. I hope you get some good responses about nursing in second pregnancies. I haven't been brave enough to try again, but there are many women here who have.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: HELLP and milk supply...my story

Postby jenh » Sat May 26, 2012 11:12 am

You did a great job to give your baby milk for four months under difficult circumstances. You can be proud of that. Your story sounds familiar to me, as well. I think the fact I was so sick combined with my baby being in the NICU definitely impacted my supply. She came home with a wicked flow preference/nipple confusion, and it took six weeks to teach her to nurse. I had a marginal supply, although if I knew then what I know now, it would have been better.

After that baby, I needed breast surgery that damaged my glands. I had even less of a supply for my next baby because of that, but we found a way to make it work even without a full supply. I would have had a full supply for one with my twins, but of course it was split between the two of them. I found a great support group at lowmilksupply.org and its sister site bfar.org.
Jen
Wife to Brett 6/30/02
Mom to Ethne Joy 10/12/03, 35 weeks, severe PE
Mom to Catie Grace 12/8/06, 37 weeks, mild PE
Mom to Riley Faith and Gavin Arthur 7/7/09, 36 weeks, PIH 22 weeks, PE 31 weeks, severe post partum PE
Mom to two angels 12/05 and 7/08
Running a Marathon for the PF: http://www.whatyourunningfor.blogspot.com
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Re: HELLP and milk supply...my story

Postby ChunkyMonkey » Wed May 30, 2012 05:00 pm

Thanks for the responses. Its nice to know I'm not alone and jenh you give me hope it might be better with another baby. I too think my supply might have been better if I knew then what I know now. I had researched what to expect breastfeeding a full term baby, but was completely unprepared for having a preemie and having to pump right off after birth. tree - like you have learned to be so thankful for clean water and good formula. This whole experience has also gave me a great appreciation for modern medicine.
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Re: HELLP and milk supply...my story

Postby caryn » Wed May 30, 2012 05:38 pm

I can think of at least two ways PE/HELLP could lead to compromised supply: 1) compromised deranged placenta doesn't properly trigger milk production after detaching 2) cerebral pressures squeeze the pituitary and it doesn't properly signal for production post-delivery.

I couldn't pump at all - bad pump resistance - and just got lucky in that my son learned to latch properly before my supply was too small to encourage.
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DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
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