Mission: To provide accurate, up-to-date education on how to cope with Lactation After Loss to grieving mothers, as well as to the care providers who care for these women after the loss of a baby.

Expand Rowan's Milk Survey.
Develop a Brochure on Lacation After Loss for mothers.
Make Brochure and results of Survey available to care providers.

Sunday, October 24, 2010

Cindy & Aiden's Story

My son was delivered stillborn at 22 weeks. He was beautiful and perfect. We named him Aiden, he was our first baby. My milk came in and I had no support or guidance. I was in hysterics on the phone with my doctors office asking for help. They offered vicodin (I am allergic to it) no sorry your baby died, nothing...

I had 3 more miscarriages total and now have 2 living children whom I breastfed. The experience I had with my stillborn son was horrific and I want to spare other moms the pain and loneliness I experienced. The breastfeeding experience with my living children was/is wonderful.

I am now studying to become a lactation consultant so that I can help other mothers with breastfeeding and also reach out to mothers who have lived through the loss of their baby.

Thank you for allowing me to share my story, in memory of our angel babies;

and our living miracles
Cian and Chloe

Rebecca's Story

My child was stillborn at six months gestation after an induced labor, when we were told he had absolutely no hope of surviving. He had a severe blockage in his ureter, so that urine had backed up into his abdominal cavity, damaging his kidneys, lungs and heart. The doctors said that he would either die before full term, or if he survived, he would either die shortly after birth or have a short and painful life of many, many operations and hospitalizations.

It was the most terrible decision I have ever made and I wouldn't wish it on anyone. I couldn't bear the thought of just waiting for him to die while things just went more and more wrong inside of me....that didn't seem like the right parenting decision to me....there was no right choice, only a few shitty ones.

My milk came in the next day, the day we left him to be cremated. I was so tired, so bruised, and then my breasts were incredibly engorged and hot and painful. My poor body just wanted to feed my baby.

Kim's Daughter...

One evening in my 18th week of pregnancy I had a sharp pain in my abdomen that doubled me over. I was home alone, as my husband was working that evening. I called my ob who happened to be on call that night. After a long talk and the fact that I wasn't having any other discomfort, she told me it was probably a muscle cramp and to take it easy and call if anything else happened.

It was late and so I laid on the couch and dozed until my husband came home. I woke up at that time and was having a couple of "cramps". Now I realize they were contractions. Then I got up to go the bathroom and I was bleeding. I screamed for my husband. We got in the car and rushed to the hospital.

When we got there they took me back right away and then off to ultrasound. I could still hear her heartbeat during the ultrasound and saw her move. Found out when back in ER that "there's nothing we can do your baby is gone". I was in shock! I had just heard the heartbeat!! How can the baby be gone!

My doctor then showed up and we went to the birthing center. She explained that I was having a placental abruption. We were devastated. They were going to take me in for a D&C because I wouldn't stop bleeding, but I begged her not to and she agreed.

I was then taken to a room and given pitocin to help me deliver. About 1 1/2- 2 hrs. later I delivered my beautiful baby girl still completely in her bag of water. No nurse or doctor where in the room when I delivered. She was so tiny, 6 3/4" long, but fully formed with all her fingers and toes.

They came in and showed her to us and then took her and cleaned her up and dressed her and wrapped her in a blanket. I held her and we cried. My family was there with us for part of the time. I had to stay overnight because of the bleeding. They shouldn't make you stay in the birthing center when you've experienced a loss. You shouldn't have to be around all the happy people and hear babies crying.

They gave us the clothes she was wearing, the blanket, a picture and her hand & footprints. We decided to let her be used for research. I know to some that seems heartless, but for us it was a chance to help other families with the research obtained. For us it was our chance to give. We have a beautiful momento box my father made with every little thing I have that was given to us. Her name is: Emily Lenore Fusco Lost: 07/08/2001 She was our first angel and first child. We will always love her and miss her.

Saturday, October 23, 2010

Britton's Story

We were full term (38 1/2 weeks) with our second child, our first son, Kenton, and went to the hospital on Wed. night to induce him. The nurse brought me into the room and began to hook up the contraction and heart rate monitor, and immediately I knew that SOMETHING was wrong. She stayed calm and tried to reassure me, but they brought in an ultrasound technician, and they wouldn't tell me anything, but I have had enough us's in my life to know that there was no heartbeat.

Finally the nurse came back in the room after having called my OB to tell me that the heartbeat just wasn't there. It was a total shock, and then the realization hit me that I was still going to have to go through the delivery process... during that 6 1/2 hours, I went through all of the stages of grief, but with the support of my amazing husband and family, we decided right then and there that we were going to find some way to use this as an opportunity to serve others.

We cried, mourned, prayed, etc. over and over again, but even in the midst of our grief, there was an unbelievable sense of peace that God placed over us. It allowed me to know God even better - my son had been taken from me, but God sent His son to die for us - and as morbid as that might sound, it made me feel better!

The next day I had the daunting task of trying to tell our 2 1/2 year old daughter what happened to the baby brother she had been waiting for so long to meet. She took it surprisingly well, although I know that there will come a time or two that she will need more explanation.

My sister-in-law is a doula and lactation specialist, so she is the one who suggested donating the milk, but she didn't get there until 3 days later. I pumped 3 times a day or whenever I felt full to avoid engorgement. I wish I had someone on staff at the hospital who was there at the beginning of our journey mention all the possibilities to me.

I do want to share out there to other women who might be going through this to take pictures with their baby - a great organization called Now I Lay Me Down To Sleep took pictures of Kenton that I will treasure forever, and will be great when my daughter and future children grow up and ask about their brother.

Keep your treasures - it's not holding on to the past, but hanging on to a piece of what lies in your future when you get to hold your happy baby in Heaven!

Elijah Patrick Cropp

Elijah Patrick Cropp was born on March 20, 2008 at 8:20pm in Nashville, Tennessee. He was born still after an umbilical cord accident in utero. He was absolutely perfect!

I had the priviledge of having personal midwives attend my birth. They were my friends, we worked together. My birth was everything I wanted it to be under the circumstances.

The days and weeks that followed were the worst in my life, ever. But, thinking back to my birth I am not saddened, I am overjoyed with the time I had with my son. I wish I had held him skin-to-skin and taken pictures of his naked body. We were blessed to have a photographer with Now I Lay Me Down To Sleep come to take fabulous pictures of our family.

I miss my little Elijah something terrible. However, we have had another child since then and she has been a healing power in my life. She is a distraction, not a replacement. Grief of Elijah gets easier and easier with time; but I also hate that it gets easier. Nursing my babies is a huge part of my life. I wish I had been able to nurse Elijah. You can peek into our world by watching our slideshow.

Vicki's Story

My precious daughter died at 18 weeks of pregnancy, I knew something was dreadfully wrong, I felt so different, I couldn't feel her move and so we went for a scan 2 days later. She had died a few days before. Our grief was enormous, and the labour was long and painful, much worse than with my live and full-term babies. My body struggled to let her go...

I had breastfed my other children but I was totally unprepared. I had no idea that my milk would come so early in pregnancy. It was a huge shock and watching my precious milk flow down the drain was more than I could bear.

There was no local milk bank for me to give to and I knew no one who had a tiny baby in need of my milk, so I watched it flow away, weeping every time and feeling so alone.

Laura's Story

During my 1st pregnancy (2002), I was twenty-five, and considered myself to be a knowledgeable person. I had just started the second trimester of my pregnancy and was healthy, other than being asthmatic & slightly overweight. I had a 3D ultrasound done at 27w4d to try and figure out the sex and everything seemed fine. We were told the baby was a girl.

The following weekend my husband and I attended a NASCAR race and were in the infield almost the entire time. On Monday morning, as I got ready for work, I realized that I had not felt my baby move since Friday. Up until that point the baby was very active on a regular basis. I immediately panicked and became hysterical. I called my OB and spoke with a nurse who told me to come in right away. I saw the Dr., who told me that everything was fine; it was just because I was overweight and the baby changed positions that I could not feel movements.

I left feeling reassured, because the Doctor gave me an explanation. The next day at work I started feeling cramps, like during menstruation and they were quite frequent. I mentioned this to a few female co-workers during lunch. They all said it was normal. The cramps became more painful and frequent. I was worried, so I called my Dr. again & his nurse told me it was Braxton Hicks contractions and not to worry. I was 28 weeks,4 days at this point.

So, a few days later I saw my OB again, this time for my normal appt at 29 weeks. He used a Doppler to listen for the heartbeat and then asked me to get dressed and come into his office. I went in and he told me that he needed me to meet him at the hospital to confirm something.

I got to the hospital and was directed to Labor & Delivery. I was clueless as to what was happening. My Doctor came in with a portable ultrasound machine, did a quick ultrasound and told me "the baby does not have a heartbeat". From there, it was mostly a blur. I was induced and delivered our first child, a son about 12 hours later. I went home from the hospital without a baby and two days later endured my most difficult and painful Mother's Day ever.

The day after Mother's Day was even more horrible than the days before. I woke up with huge rocks where my breasts used to be. I was in shock and in a tremendous amount of pain. I had no idea my milk would come in. Naively, I thought that since my baby was born dead, my body would not produce milk. Not a single person at the Hospital had mentioned anything.

I called my OB's office and asked what I could do to alleviate the pain and make the milk go away. I was told to take ibuprofen and apply ice. That's it. I still remember being in extreme pain at my son's funeral, a week after he was born. It seemed so cruel that the same body that could not grow a healthy child could produce the miracle of breastmilk. I felt mocked and cheated all at the same time.

Years later I learned that my Doctor could have prescribed me prescription medication to stop my milk from coming in. Also, there are OTC choices to help. Lastly, I found out that I could have pumped and donated my breastmilk to a baby in need. No that I know different, I will share this priceless knowledge while also hoping that I never have anyone to share it with.

Friday, October 22, 2010

Jill's Story

Joshua was born with Hypoplastic Left Heart Syndrome. After 2 open heart surgeries, the first one at 3 days old, and the 2nd at 1 month old, Joshua passed away at 7 weeks old on Oct. 6, 2010. I pumped almost exclusively those 7 weeks and stored all of my pumped milk.

Just today, Oct. 22, I donated almost 900 ounces of my milk to the Indiana Milk Bank. Please visit my blog to follow our story.

Michelle & Sawyer's Story

My son was born prematurely at 28 weeks via emergency csection. We knew he may be early, so we prepared mentally as best we could.

Because I had low fluid during the pregnancy, I did not know about his heart.

The day after he was born, we learned he had a very severe congenital heart defect named Tetralogy of Fallot with Pulmonary Atresia.

He died nearly 2 days after he was born, in my arms.

I honestly think my milk came in so quickly with my son because I was able to hold him against my chest when he died. I believe this kangaroo care brought so much out of me and him as well. I only wish that our time together, would have been much longer.

**Michelle has started Sawyer's Heart which hosted a Walk To Remember just last weekend, and plans to donate memory boxes in Sawyer's memory. Follow her project on Sawyer's Heart on facebook or on her Blog.

Thursday, October 21, 2010

The OB said there would be no milk...

When I miscarried at 17 weeks I had to have a D & C. I asked about milk. The ObGyn said it was too early, there wouldn't be any. I had nursed my first child for 3+ years - she was 4 1/2 at the time. A couple of days after the D & C I was in the shower and my breasts were tender. I touch them and milk came out. I hand expressed in the shower for a couple of days. I had a similar experience a few years later, another second trimester miscarriage. At the time I was nursing my second daughter, she was 2 1/2 so any milk that would have come in was taken care of by nursing her.

~Leigh Anne
New York, NY

Alone and 17

I was 17 (and single) when I became pregnant and lost the baby at 12 weeks. Even though the miscarriage was "for the best," this was 20 years ago and I still think of that baby almost every day - and almost no one knows about him/her. I held his (I think of the baby as a boy) body and because I was too young to be pregnant, and not many people knew, I had to just flush his body away. I think of this and feel such regret and loss - I wish I had known more at the time, and had some sort of burial for him.

I now am married and a mother of three. But the baby I lost is always added to my number of children only in my mind and heart.

Thank you for this opportunity to tell my story.

Karin's Story

After my baby was born and died at 19 weeks, we were devastated. He was to be our first baby. I was told that it was possible that my milk would come in and if it did, I should bind my breasts with an ace bandage to dry them up. I did not realize that this medical advice was not based in evidence and could have been potentially harming. Although it was painful it was also somehow fitting that my milk came in fully on the day of my son's burial. My body was aching to have him in my arms just as my heart was aching for him as well. I didn't realize that my body would make milk for a baby that could never have survived.

I must have looked engorged, because a sweet aunt asked if my milk had come in and reassured me that my body hadn't failed (as I was afraid it had by birthing a son too early), because it had known what to do to take care of this baby. It helped me to hope for the future.

Friday, October 15, 2010

The Story of Rowan's Milk

When I lost my daughter Rowan, she was full term and my second child, so I knew that my milk was likely to come in within a few days. The hospital gave me no lactation education. I specifically asked when it became clear that the nurse was done giving me my “check out” information without mentioning lactation. What little information she gave me was outdated and unhelpful.

As soon as I came home from the hospital, my dear friend and La Leche League Leader, Melissa Cole, from Luna Lactation, came to my home with herb teas and tinctures--sage and peppermint to help dry up my milk and motherwort to help with the hormonal and emotional changes I would be experiencing. When my midwives asked how I felt about my milk coming in, I thought it would be easier on my already raw emotions if it did not.

My body had other ideas. This was my second child and my breasts remembered what to do. In spite of drinking tons of iced peppermint tea with plenty of sage and motherwort, my milk came in on day three. By that night my breasts were achy and hard. I called Melissa to help me figure out what to do next. She suggested that I pump off just enough to feel comfortable so I would not increase the milk production, and take ibuprofen for the pain. I used icepacks and cabbage leaves to help make me more comfortable, but the milk just kept increasing. My heart ached as I woke every two hours with breast engorged with milk and no baby to drink it.

By three a.m. I found myself emailing Melissa to ask about donating my milk. She had mentioned that possibility and I had already pumped 9 oz in less than five hours. I did not think that a Milk Bank would take my milk because of my allergy medications, but several of my friends had been involved with direct mother to mother donation. Another friend, who gave me a great deal of support through this difficult time, had two adopted sons, and she told me how appreciative she had been for any breast milk she could get for her babies. I realized my milk was going to come in whether I wanted it or not. So I made the decision to pump as long as I needed to and find someone who could use it rather than suffer trying to suppress or dry up the milk.

My sister had a four-month-old baby herself. She had some of her milk stored in our freezer, and when I saw the difference in the color of our milk I knew mine was the “Liquid Gold” they talk about. I wanted to donate it to a newborn who needed the extra nutrients and immunities. As it turned out, I found a friend of a friend who had an adopted seven- week-old baby boy by the same name as my daughter, Rowan. I knew then it was meant to be. I came to love the idea that my baby’s milk could help another baby thrive. I could even write on the freezer bags “Rowan’s Milk” as I had wanted to, and not worry that it would make the recipient mother too sad.

Over the next five or six weeks, I was able to donate about 450oz of milk to “the other Rowan.” My friend Lauren, who was a part of the Oregon Nursing Mother’s Counsel, helped me buy a new Medela Pump In Style Advanced at a discount when it became clear that my ancient pump was not up to the challenge of exclusive pumping. My sister was returning to work in a month, so she was able to use it when I weaned off pumping. Any time I felt full or uncomfortable, I pumped until empty and froze the milk. But as soon as I spaced out my pumping and pumped a little less each day, I was able to wean very quickly without any engorgement or discomfort. I am sure I could have weaned sooner, but I hesitated to give up that one last physical connection to my sweet baby and wanted to give as much milk as I could.

Melissa never stayed long when she visited as she had a newborn herself. Our babies were due only five weeks apart so she did not want to bring her to see me. But I do not know how I would have gotten through those first few weeks after losing Rowan without her expertise and support. I am still infuriated that the hospital allowed me to leave without seeing a lactation consultant or even mentioning that my milk would come in. Most women do not have the resources I do, and I hope to expand the Remembering Rowan Project to find ways to provide resources to those mothers who need them.

I have talked to many other mothers in the past two years and learned that after miscarriage or even an abortion some women may lactate, but no one ever warned them. A friend who lost her baby to SIDS spoke of crying in the shower as her milk went down the drain until a friend finally called a lactation consultant to help her. Sadly, it is not only the mothers who lack this information, but most of the Lactation Consultants, Breastfeeding Educators, and Doulas I have talked to do not know much about how to help their clients who have lost a baby.

When you lose a baby you suddenly discover you are a part of a secret club. Many people do not talk about their experiences until another mother has lost her baby. However, the fact that most women will lactate after losing a baby, even early in pregnancy, is the even bigger secret. Once you have lost your baby, you are given lots of resources on how to deal with the emotional grief but no one warns you about the physical grief. Pat Schweibert’s book, When Hello Means Goodbye, given out in many hospitals, says it well, “My body had its own grief. And its tears were white.”

Lactation After Pregnancy or Infant Loss Survey

As a result of my own experiences after we lost our first daughter Rowan, I am working toward improving Lactation Education for mothers who experience a loss. I am starting this new blog as a place to share women's stories, and have put together a survey for mothers' experiences with lactation after a loss in an effort to show what is needed and improve the resources available to those mothers. If you have experienced a loss at any stage of pregnancy or during the first year, please consider following the link to participate in my brief survey. With your help, we can get the information out in the open so other grieving mothers are not taken by surprise and can get the lactation support they need.

Lactation After Pregnancy or Infant Loss Survey