Breastfeeding Your Baby - Part One

In part one of this two post series on breastfeeding a baby with Down syndrome, guest blogger Lisa Morguess from Life As I Know It shares her personal challenges and triumphs nursing her son Finnian. Next week in part two, she gives practical advice on how to establish and maintain a successful breastfeeding relationship with your newborn.
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One of the many widely-held misconceptions about Down syndrome is that babies with Down syndrome won't be able to breastfeed. Though breastfeeding a baby with Ds can be challenging, I would like to offer some encouragement to expectant and new moms of babies with Down syndrome who would like to breastfeed.

I'm not a medical professional or a trained lactation expert… but rather just a mom who, before my own son was born with Down syndrome, successfully nursed five babies for the long haul, and was determined to breastfeed my sixth baby, Down syndrome or not.

Not every baby with Down syndrome is faced with difficulties in breastfeeding but for those who are, the two main things that hinder breastfeeding are low muscle tone, and immediate and prolonged separation of mom and baby due to issues the baby might have that require a stay in the NICU. Finnian and I were challenged with the latter issue.

Finn was born at home, where he stayed for roughly half a day before we had to rush him to the ER because he was spitting up blood. In the first few hours after his birth, he was so sleepy that he never really woke up enough to latch on well and nurse. In the ER he was hooked up to all kinds of tubes, wires, and monitors and by that evening, he was diagnosed with a duodenal atresia. He was admitted to the NICU and had corrective surgery the following morning.

For several days, while his intestines healed from this major gastric surgery, he was fed intravenously and I was not allowed to attempt nursing. My milk came in during that time, and I began pumping at regular intervals around the clock and storing my milk for him. I was told that he'd most likely have to start with bottle feeding, and it became clear to me pretty quickly that we had some major challenges ahead of us.

I was heartbroken at the prospect of not being able to nurse Finn. For me, breastfeeding is a huge part of how I mother my babies, and I could hardly fathom not being able to share that with Finn.

When Finn was cleared to tolerate oral feeds about a week after his surgery, the nurses in the NICU were supportive of my desire to breastfeed; however, it was frustrating because everything in the NICU had to occur by the clock and by the numbers. He had to be fed on the schedule the nursing staff set down for him, and if I couldn't make it to the hospital in time, he was given a bottle (of my breast milk). If I was there to nurse him, he had to latch on within a certain number of minutes or I was made to call it quits and give him a bottle. The same went if he didn't take the prescribed number of ounces in the time allotted. It was all very stressful, and I spent a lot of time crying. The stress and the pressure didn't go very far in helping us get a good breastfeeding relationship established. There were lactation consultants on hand, and they were helpful, but all in all, it was a frustrating, discouraging situation.

Convinced that Finn would do better at home where I could nurse him around the clock without the constant supervision and vigilance of the nursing staff, I couldn't wait to get him out of the hospital. By the time he was discharged twelve days after he had been admitted, we were nursing, but it was hit or miss. I was using nipple shields because he seemed to do better with the rigid shape of the shields, which were similar to the bottle nipples he was already becoming used to. I would nurse him and then my husband would follow up with a bottle of expressed breast milk to make sure he was getting enough.

As I suspected, he did seem to do better once we got home, and within a couple of days I was able to ditch the nipple shields. He was latching on well (it seemed), and nursing well (it seemed). It wasn't long before we stopped supplementing with bottles of breast milk, and I was exclusively nursing him.



It soon became clear that he wasn't gaining weight. He had weighed 6 pounds at birth, lost the typical several ounces that babies lose directly after birth, then lost more after his surgery. I think in the NICU he went as low as around 5 pounds. By the time he was discharged, he was back up to his birth weight, but after a week at home, he was still at 6 pounds. Then after another week or so, he had only gained another ounce or two.

I'll never forget our pediatrician - whom I love for the most part - sending me home with several cans of formula and telling me that Finn most likely just wasn't going to ever be able to nurse well because of his Down syndrome. I was devastated. None of my babies had ever received formula, and I felt like a failure.

Fortunately, my midwife insisted that: (a) if I was going to supplement, it should be with the breast milk I had stored while Finn was in the NICU, and (b) I needed to find a really good lactation consultant. I did both. I found a lactation consultant who refused to believe that Finn couldn't nurse simply because he has Down syndrome. Yes, it was going to be a challenge, but it could be done, she insisted.

The LC set me up with a supplemental nursing system (SNS) and spent oodles of time with me and Finn over the course of several appointments, observing us and giving me tips on positioning, etc. With her help, Finnian and I were able to overcome the hurdles that were in place.

Despite my perception that Finn had learned how to latch and nurse well, it apparently wasn't the case, and because he actually wasn't latching properly and his suck wasn't great, my milk production went down, so he wasn't getting enough, and the cycle was set in motion. Even after Finn’s latch improved, my milk production did not recover and I began taking herbal supplements to increase yield. Supplements helped to a degree for a time, but eventually I turned to Domperidone which helped immensely, and was the final missing puzzle piece for us.

Finn nursed until he was thirty-three months old when he self-weaned, which was bittersweet for me because he was going to be our last baby (he is not though... you never know what life is going to throw at you!). Getting breastfeeding going was definitely an uphill battle for us, but through perseverance and good support, we were able to make it work, and it was completely worth it to me.
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Tune in next week to get the specifics you’ll need to overcome complications and breastfeed your baby with Ds.

Breastfeeding Polls

Next week begins a two-part series on breastfeeding a baby with Down syndrome. To get ready there are a couple polls on nursing over in the left column. Please take a moment to share your experience in the polls.

Because breastfeeding can be complicated there are several ways to answer the question: did you breastfeed? For the purpose of this poll, the question is did your baby end up nursing from your breast? Even if you used nipple shields or an SNS feeder, please still select one of the options indicating that you were able to breastfeed.

We would love to hear your thoughts on your breastfeeding experience, so please leave them in the comments section.

Congratulations to a New Ds Mama

Adrienne is about 30 weeks pregnant with a little darling who has Down syndrome. She is blogging about her pregnancy (and other neato stuff) at The Upside of Wes. Check her out and get a sneak peek at Wes.

Hippotherapy—Just Horsin' Around?

Guest post by Alyson who blogs at wordsofhisheart. (Make sure you check out her blog. She has a wealth of great speech resources there.)

The first time I heard about hippotherapy, I didn't take it very seriously. I envisioned children who should have been in physical therapy instead donning cowboy hats and going for a leisurely trail ride.

But when Noah turned 5 and still wasn't speaking, I remembered posts I had seen on our local Down syndrome network from parents singing the praises of hippotherapy. After doing online research and watching some amazing YouTube videos of children participating in speech, occupational, and physical therapy while riding, it became clear that these therapies were successfully coordinated into the hippotherapy session, mimicking real life experiences.

Seeing the integration peaked my interest because Noah was having a difficult time processing the information necessary for speech along with all the other skills he was acquiring. When his speech therapist confirmed a diagnosis of apraxia, I knew it was time to pursue hippotherapy.

Was it grasping at straws? Maybe. But the amazing results we’ve seen in the four weeks Noah has been participating in hippotherapy have convinced me of its value as a legitimate therapeutic modality.



The Four Week Scoop
Week 1: An adult rode on the horse with Noah. They spent a few minutes in the arena walking and then throwing balls into a basketball hoop where Noah worked on color identification. Next they rode outside on the trail where the trees were full of hanging animals—a perfect opportunity to work on vocabulary and signing. I was worried that he would be terrified; he wasn't.

Week 2: Noah rode the horse by himself. His therapist and the arena volunteers walked along either side of the horse. During this session Noah's posture had improved. Instead of the common low tone slouch, Noah was sitting straight and tall. This was an instinctual posture correction that was necessary to feel the most secure on the horse. No prompting was necessary.

Week 3: Noah couldn't get on that horse fast enough. When his time on horseback ended, Noah’s PT had him do some running, throwing, and climbing using onsite equipment.

Week 4. Noah rode that horse backward! The PT actually had him sit facing the horse's tail for part of the session. He rode in from the trail in that position, and it was evident by his posture and expression that his confidence level was very high. After the ride, he continued his running, throwing, and climbing.

The Results
The biggest change for Noah has been the area of speech. Prior to hippotherapy, he could say only a few words clearly and would attempt speech only if it was modeled for him. After only four sessions, Noah speaks about 20 words clearly and is making approximations of several more, sometimes spontaneously. Something extraordinary happens to Noah when he is up on that horse and it carries over to his daily living. The feeling of the rhythm of the horse walking seems to be helping Noah’s brain organize what it needs to make speech happen.

Hippotherapy Vs. Horseback Riding
There is a notable difference between hippotherapy and horseback riding. In hippotherapy, the horse is used as the treatment tool to achieve physical, speech, and occupational therapy goals. In horseback riding, the rider's focus is to improve on their horsemanship skills, and in the process develop companionship, responsibility, confidence, and leadership skills.

Getting Started
So, you're interested in hippotherapy for your child... now what? If your child is at least 2 years old and currently receiving early intervention services, ask his or her therapists if they offer board-certified hippotherapy or if they know of a local therapist that does. I was not even aware Noah's center offered it until I asked. You can also visit the American Hippotherapy Association to find a therapist in your area. Remember, this is not just a physical therapy option; speech and occupational therapists can also be board certified to conduct hippotherapy sessions as well.

And now for the question everyone wants answered: Will insurance pay for it? Under some policies, yes insurance will pay for it. When submitting therapy claims, the insurance company is not usually interested in what equipment is used in therapy; they just want to know who provided the service and that the therapy did take place. Unless a policy specifically excludes equine-assisted (horse) therapy, they will likely cover it. Unfortunately, Medicaid is an insurer who specifically excludes hippotherapy. The good news is that many of the hippotherapy centers offer scholarships, so don't hesitate to ask if you need one.

Happy Trails!

Your Turn
I was so excited after reading Alyson’s post that I went straight to the AHA and located a few therapists in our area. We are going to pursue hippotherapy! How about you? Has your child participated in hippotherapy? If so, were you impressed with the results? If your child hasn’t done it yet, are you interested in checking out hippotherapy?