Search This Blog

Wednesday, December 8, 2010

Why we Share: A Personal story of Milk Sharing

With Human Milk 4 Human Babies being in the news all over the globe recently, the media keeps asking "Why?"   Why are mothers willing to share their breastmilk, and why are mothers looking for breastmilk to feed their children?  Health Canada and The American Food and Drug Administration are issuing warnings about  sharing breast milk with women online. The following is an amazing story of one mothers struggle to nurse her baby and how donated breastmilk saved her sanity and possibly her sons life.

Our Story Using Donor Breastmilk

by Lynn Heinisch on Monday, 06 December 2010 at 03:46
There has been so much said about milk sharing, positive and negative, that I feel as though I should try and get our story out there.

Finding Breastmilk donors wasn't scary to us, my husband and I, because. . . .we MET online. This was back in 1997. Back before the whole internet boom, before it was common to meet people on line. And for my friends and family, it was scary. I didn't understand why, as if you knew me and you trusted me, you should trust my judgement.

Fast forward to 2008:
We, my husband and I, decided we wanted to have a family. We did our research and decided on a hospital birth attended by a midwife. For that we had to drive to Princeton, NJ. It was what we wanted, so it wasn't a big deal for us . . .until the miscarriages started. First one. Then two. Then three. I was told the same thing every time:

"Some times these things happen"
"Most women have at least one miscarriage."
"Don't worry, it'll happen."

I didn't believe them. I went and was worked up for 'infertility.' Invasive testing. Tons of blood work. They didn't see 'anything wrong with me' so on we went to try Clomid.

I was so low. So tired. On our second round, I got pregnant. I got excited. I saw a heartbeat. I was further excited! The risk of miscarriage drops drastically with a heartbeat, right? Then. I miscarried. They asked me to 'harvest' my child and bring it to them so they could test him because I refused a D&C while there was still a heartbeat.

After that, we were done. I couldn't take any more. I was exhausted. Then I got pregnant again. It was twins. I lost one of the twins and after that, I had a very normal pregnancy. My son had a single artery cord and when he was born was IUGR.

He lost weight at the hospital, which is normal for breast fed babies, and I was constantly harassed about wanting to breast feed. He was too tiny, my breasts were too big, my nipples too large, his mouth too small. And I was told to supplement. I had a sign on his 'warmer' that said 'no bottles, no pacifiers.' but I found out they (they nurses) gave him a bottle. Any time he was taken away to do whatever he came back with a pacifier. I should of know better.

He screamed. Oh, did he scream. I was told 'babies cry.' That some don't 'tolerate' formula, but it's 'normal.' I was given the go ahead to take him off formula at 6 weeks.

 At eight weeks he was still screaming. Still nursing constantly. He was 10lbs 6oz. I was proud. I did it. I got him to breastfeed. I got him to thrive.

We came back two months later and my son had lost weight. Over two pounds. I was told to give up breast feeding again. I said no. I said there has to be something wrong. I asked if I should remove food from my diet. If he was allergic to something in my milk. I was told no, no, no. Even my midwife said no.

We did bloodwork. My midwife kept accusing me of having IGT. I found it hard to believe that I could have IGT as I have DD breasts. So, I didn't believe her. I didn't have PCOS. If I did, I would have trouble getting pregnant, not STAYING pregnant, right? It had to be something else. I caved and we tried formula again. I gave him two oz and the screaming started. My husband gave him another two oz and the diarrhea started. Watery, mucousy diarrhea. I called the pediatrician right away and told them he wasn't tolerating it.

"He needs to adjust to the formula, try a different kind."

I was sent back to the store to find 'allimentum' and stat bloodwork was ordered as he didn't tolerate that either. His sed rate was 19, 20 was 'high' but his liver functions were dangerously high. We were sent to CHOP, Childrens Hospital of Philadelphia. It was during this time that I looked at gluten. I figured it couldn't hurt. So I eliminated it from my diet, but the doctors at CHOP weren't impressed. I was told in the ER that I should give up breastfeeding and I asked him how much medical training he had in breastfeeding. He admitted to me about 2 hours.

Liam- two hours before being admitted to CHOP
Little Liam being admitted to CHOP

We were shown to our room, I informed the nurses right off the bat that we were attachment parents, that we were cosleepers, my son was intact and was not to be retracted, we wore him. All things I'm sure were foreign to them. We weighed his diapers (to see how much urine he was putting out) and we weighed him pre and post feeds. I tried explaining to them we nursed to sleep, and they didn't understand that. They didn't understand why I didn't put him in a crib.

They didn't get babywearing either

I eventually had to talk to the resident and tell them they weren't respecting our beliefs. It was then they backed off. I never got weights threw the night, they assumed I wasn't making enough and that I had IGT. Lactation came in. She told me to give up. That I could pump around the clock but because she thought I had PCOS and IGT that I wouldn't produce more milk.

I showed her.

I pumped every chance I got and I started producing more.

She was shocked.

We were discharged after five very long days. I felt horrible as my husbands first fathers day was spent at CHOP or running home to feed our dogs or do diapers. I left feeling defeated. I had decided to blog my time in CHOP, mostly for sanity, but so people could know our son was sick. It was easier for me to tag people in a note so they knew what was going on rather then call everyone. It also saved me from having to repeat myself which is something I really hate to do.

It was then, after my son was 'diagnosed' with Failure to Thrive that I met Molly. Molly is one of my donors and Molly blogged about me. She read my note on Emma's page and her frustrations with CHOP inspired her to help us. Molly's blog put us in contact with another mother who had a large stash and offered her milk to us. I had two friends who gave us about 50 oz each, but this woman, this woman was a milky goddess.

She had to of given us over 1000 oz of milk. Easily.

She was embarrassed that she produced so much so I have never shared her name with anyone. It was then my son started to thrive. I noticed a change in him. He was happier, but he still cried when he got the bottle of EBM. He nursed
more. He gained weight. But he would always have bad tummy pains after the EBM. I always thought, at the moment, they had broccoli. But it wasn't that. It was gluten.

We were now being seen at our pediatrician weekly for weight checks. He gained. Kept gaining. Then I felt comfortable enough to take him off of the EBM and solely go back to breast. We never looked back. My sons last bottle of donated breastmilk was the last week of July.

liam at 7 months old

Our pediatrician was uncomfortable with the EBM at first. She warned me about viruses and diseases and I told her I was more comfortable with the EBM then the Formula. I also told her we screened our donors. She asked me a few questions and smiled. She wanted to make sure we were being smart. And I would like to hope that todays mothers ARE being smart.

In June my son weighed 8 lbs.
In September 14 lbs
In October 17 lbs
And now weighs almost 20 lbs
Liam's pic taken two weeks ago!

Tomorrow the FDA will address 'informal milk sharing.' I use quotations because I don't personally see it as 'informal.' I see it as women, reaching out to women and becoming friends. I still have contact with all my donor moms, some are closer then others, but I still know them. I want my child to grow up and know them. I want people to stop looking at me like I have a third eye when I mention breast milk saved his life.

I'm sure the FDA will try and outlaw this. Because they see children like my son expendable. They don't care about my son. The AAP doesn't care about my son. If they did, they would of listened to me at CHOP. They would of sent us to gastric. They would of tested my son for Ciliac, for allergies. But they didn't. They didn't believe a mother.

So forgive me if I don't believe you. Like you, I'll make my own informed decision. And if it's different from yours, I don't really care.