Monday, July 18, 2011

Breastfeeding My Daughter, Who Just Happens to Have Cerebral Palsy - July 18, 2011

Welcome Carnival of Breastfeeding readers! I am so very proud to be taking part in this carnival, which is about breastfeeding a baby with special needs. Thanks for stopping by!

AND as of 8/11/12, part of the Summer Disability Series Blog Hop sponsored by With a Little Moxie (theme: a favorite post).

In many ways, I’ve been relatively lucky - even as my definition of “lucky” has changed over time. My beautiful daughter was born at 40 weeks, 5 days, naturally, via a midwife-assisted hospital birth. My pregnancy was essentially uneventful - morning sickness, a kidney stone, PUPPP, but nothing on the checklists I’ve since read over and over and over. No red flags, no warning signs. And through it all, I knew that I was going to breastfeed her – no question about it. I educated myself through books, websites, and online support forums, and I went to La Leche League meetings as well.

My daughter was born without major issues and with high APGAR scores, she latched on within a half hour, and we went home early from the hospital. She continued to latch and nurse well once we got home, and she met other early milestones with ease. I had no idea that she had been born with cerebral palsy that likely developed in her first few weeks as a fetus in utero. (To this day nobody has been able to give us a direct answer as to why she has CP.)

Early Nursing Habits – A Sign?

Looking back, though, I wonder if my daughter’s nursing habits were related to the disability we eventually discovered. She was a fast nurser - five minutes on the boob and she was done. I’d watch the clock and beg her to go six minutes. She wouldn’t. Meanwhile my friends online and off described far longer nursing sessions. I had a bit of overactive letdown and oversupply, so I chalked her speed up to that and to her being efficient and worked on troubleshooting. She had green poops, but I didn’t change my diet - I figured they were related to the pumped milk she reluctantly took when I was at work, though she never got the hang of any bottle. She was a slow gainer, never on the chart in fact, and yet for the most part no doctor suggested supplementation (she did gain on a tiny weight curve and a better height curve).

Did she in fact nurse quickly, gain weight slowly, and have trouble taking a bottle because of her low muscle tone, some underlying but undiagnosed latch troubles, or in relation to medical/metabolism issues that some kids with cerebral palsy have? I will never be fully sure; I had no idea I was looking for any larger relationships. I was just nursing my baby. Considering her difficulties in these areas, I cannot imagine how she might have fared if I hadn’t been able to breastfeed her.

She was exclusively breastfed for six months, at which time we slowly introduced solids. She didn’t take well to them at all. She wasn’t very interested or very good at eating - but again, no huge red flags. Plus, since she was still nursing many times a day, I wasn’t worried about her getting enough fat, calories, or nutrients.

Meeting Milestones – Or Not

Meanwhile, at six months, she couldn’t sit unassisted. And at nine months, she still couldn’t sit. At that point, we were referred to the state’s Early Intervention program, and then it all kind of blurs: a change of pediatrician, a referral to a neurologist, an MRI, and then the formal diagnosis. I nursed her through it all - through the nurse at the MRI recommending that I give Pedialyte before breast milk when the sedation wore off (I didn’t, and I asked several times for the parent paperwork to be updated to contain more information for breastfeeding mothers), through the heartache of the diagnosis, through the dental problems that developed as a result of the CP, through biting phases and long sleepless nights full of unexplainable screaming, and beyond.

We’re Still Going…and Going…

At almost four, she still nurses for naptime - infrequently - and nighttime. Four. Well beyond any goal I’d ever set and possibly into the “I’m kind of done now, dear” territory. Ahem. And yet I know she still needs it – for comfort in a world that she cannot easily navigate and for nutrition on days when she still eats like a bird. She developed her own sign language for nursing – pointing to her own chest – and now she also says “Ba-yee?” when she wants to nurse. It’s clearly a priority for her, and so it’s still a priority for me.

[Note: After I wrote this, she did start cutting back even further, going days between nursing sessions, and we are definitely on the road to weaning. In case you were wondering.]

The Unusual Challenges I Face

I know many mothers who have children with disabilities who were unable to form a breastfeeding relationship for various reasons. The child’s health. The mother’s health. The child’s inability to physically nurse. The child’s serious weight concerns. The child’s severe allergies. Misinformation given by medical professionals or family members. The stress that goes with a child’s diagnosis causing priorities to shift. The list goes on. But like I said, we were lucky. I never had breastfeeding issues related to her disability, just the usual minor bumps in the road. It was the one thing that wound up going well for us. The fact that I didn’t know she was disabled until she was a bit older, rather than finding out at birth, probably helped us too – nobody ever said “You can’t do this just because.” It was just the default that I could and that I would.

The biggest challenge for me has actually been finding peers for my journey. I have many, many friends with neurotypical children who nursed for one, two, or more years. I have online support for breastfeeding, and I provide support in turn. But I have no friends with a child like mine. The online support groups I tried to join tended to be full of discussions of bottles and formula and feeding tubes and pumps and IV lines - understandably so, but not a place where I could find answers, commiseration, or help.

A New Definition of Success

What I do know is that I succeeded. My daughter still cannot walk unassisted - though she’s close, and everyone says she’ll do it soon - and she still cannot speak properly - though she has more words and signs every day. She’s smart as a whip too. She has a cast of thousands, as I joke - physical, occupational, and speech therapists; parapros; teachers; doctors; and more. But she doesn’t have any major medical concerns, thankfully, and she’s pretty much at the same level as her peers intellectually. Above all, she continues to grow, thrive, and make progress. And I credit being able to give her breast milk - the biological baseline - as a huge contributor to her success.

I welcome your polite, thoughtful comments, but I reserve the right to refuse to publish any that I don't want to publish. This is a touchy subject, I am aware, so please comment respectfully!

Don't miss these other great posts from contributing blogs:


  1. This is a very brave post, Marla. Thank you for sharing - kudos for your courage and candidness.

  2. Painfully honest but until my daughter was born (with DS) I didn't even know what CP was. I can't imagine the attitudes you've had to fight. Yay to you for taking the dragons on. Kudos!

  3. Beautiful post Marla; sn parents to be need to see more posts like this-it's very encouraging!! xo

  4. I so enjoyed reading the story of your nursing journey with R! I imagine in many ways it was actually better that you didn't have a diagnosis when she was born, as so many people seem to discourage moms from nursing babies with special needs, which seems so counterintuitive to me. I totally agree with you that a big part of her success has been that she was breastfed (and has a great mom!)

  5. I think it's wonderful that you are giving your girl the gift of a breastfeeding relationship. My girl also has CP, and was born with a cleft palate, so we could never nurse. I just had to pump for her for a year. I still mourn the loss of nursing her and am glad that you get to have that with your child.

    It sounds like you are doing an amazing job of mothering your daughter. Keep on keepin' on, mama.

  6. A great post from a great momma! You've been through so much, and continue to provide something so special to your sweet little girl. <3

  7. My son has a chromosomal disorder which we didn't discover until after he had weaned at 18 months. Perhaps it was why he had trouble latching but he did latch with the help of a shield and eventually without one and then went on to nurse until 18 months. I am so proud I was able to give him this wonderful gift.

  8. congratulations on such a long and successful nursing relationship!

  9. beautiful and strong post, as are roo and her mama. four is FABULOUS!!!

  10. Marla, I'm so glad you told me about this post. I appreciate reading about your situation. It commend you for sticking with what you know is the best decision for your daughter. As you know, I'm also still nursing a child that's 4, and I wouldn't change it for the world :)

    Dagmar's momsense

  11. Thanks so much for sharing your story. As a former LLL leader, I am continually amazed by the stories I hear. I'm so glad you decided to share. I know you'll give hope and encouragement to others.

  12. Thank you so much for your post. I have a 5 week old baby with severe brain damage and I'm breastfeeding her. I was worried I couldn't do much for her but now I can see I'm doing a lot.

  13. Wow, what an awesome mom you are!!! Nursing until 4 is an amazing feat! That milk you made has surely benefited both of you!

    (dd is 4 the end of the month, nursing and showing no signs of weaning!)

  14. Thank you so much for posting this. My little girl has CP-quadriplegic spastic. Although she was diagnosed from birth I have experienced many of the same things you have talked about in this post. She is almost fourteen months and still cannot sit up and we are in the biting stage of nursing.

    I've been through the screaming stage-it still goes on at times- and the up at all hours stage and now with the biting stage I was looking for some answers online as my little girl doesn't know how to sleep without nursing and won't take a pacifier. Your post is an encouragement to me that there is a light at the end of the tunnel and I can make it through this stage too.
    Thank you