Monday, February 14, 2011

Part III: Mellanie's Story -- Breastfeeding Bekah

I have the privilege of working with Mellanie Shepperd, an amazing lactation consultant, as Chapter Leaders for the Tarrant County Birth Network.  I had at least known of Mellanie and spoken with her on the phone for about 4 years before actually meeting face to face.  She has been a regular visitor in my Class 12 for quite some time now.  She has helped so many women in and around Tarrant County over the last several years.  She also runs a free weekly breastfeeding support group, For Babies Sake, with another LC every Tuesday night in Arlington. This is her touching story of breastfeeding her baby born with Kabuki Syndrome.  She had never written the story before and she told me it was much harder than she expected.   Mellanie, I am honored that you would share it here.  Thank you.

When I was pregnant with Bekah, I had a sense that something was different about her.  It wasn’t something I put into words often, but I knew.  We were planning our first homebirth and had all of the supplies ready.  The day I turned 35 weeks, my water broke.  That put me out of the running for a homebirth, much to our disappointment.  After consulting with our midwife, we needed to make the decision to either go to Dallas and deliver with her back-up OB or go to Ft. Worth and deliver with a hospital-based midwife group.  After some debating, we decided to go with our midwife’s backup.  We assumed that if he was her backup, he must be natural-birth friendly and supportive of our wishes.  How wrong we were!  He was far from supportive and was NOT happy with me expressing my own desires & opinions.  Needless to say, we were not friends by the time Bekah was born!  I am so thankful that God gave me the courage to stand up for myself and my baby.  She would not have fared well with the interventions that the OB kept pushing.  Anyway, I guess that is a story for another day.  Now, on to the breastfeeding part of this story.

Despite the fact that Bekah was coming 5 weeks early, it never occurred to me that she would have difficulty breastfeeding.  After all, I was a lactation consultant.  Of course she would breastfeed!  (In hind sight, I wish that I had at least made sure I had access to donor milk, just in case.)  She was born weighing 5lbs 12oz and initially appeared to be very healthy.  She latched on shortly after birth, but didn’t feed well.  When it was time for her newborn exam, her blood sugar was very low.  After much debating and trying to express colostrum without any luck, we ended up allowing her to be supplemented with formula.  Over the next 5 days, we battled low blood sugar, difficulty maintaining body temp (which, much to the amazement of the nursing staff, was remedied by almost constant skin-to-skin contact) and jaundice.  We dealt with so much misinformation about breastfeeding that it was astounding.  One nurse even told us that Bekah was having trouble having bowel movements because colostrum is constipating!  My amazing hubby took her out into the hall and lectured her for 15 minutes.  To make a long story short (the hospital stay could be a blog post all its own!) we left AMA on day 5, still struggling to breastfeed.  It was a real eye-opener for me on how even the strongest parents can make poor decisions when they are constantly battered by medical professionals.

For the first five weeks of her life, we nursed, pumped and finger-fed her pumped milk.  It was exhausting.  She was barely gaining weight, spit up A LOT and could not be put down without instant screaming.  In desperation, I did an elimination diet and determined that she could not tolerate dairy or soy in my diet.  I eliminated these foods and the spit-up decreased dramatically.  Chiropractic care took care of the rest.  She began gaining weight a bit better, but was still on the very low end of normal.  By that time, she was past her due-date and “should have” been doing much better with breastfeeding.  We finally got her to the point that she could breastfeed well enough that I didn’t have to pump and supplement her with expressed milk, but she couldn’t maintain the latch for more than a minute or two.  She popped on and off and would nurse for 30 minutes or so before she fell asleep, exhausted.  She was nursing every hour or two.  By her two-month appointment, we were really questioning the pediatrician on what was “wrong” with Bekah – why was she still so floppy, why was she gaining weight so slowly when my other two kids had gained very rapidly, why did she still have almost no head control, why wasn’t she smiling or making any eye contact with us?  They had no answers, other than “she was a preemie, she will catch up.”  I remember thinking that 5 weeks was not that much of a preemie.  At about that time, the OB who had delivered her called to say “Oh, by the way, you had a two-vessel umbilical cord, which can be associated with mid-line birth defects.”  He recommended that we have her kidneys & heart checked.  We had an ultrasound done of her kidneys and a full check-up on her heart.  Thankfully, these tests came back normal, but we still had no answers.

I frequently got comments about how tiny she was.  A stranger at a restaurant said “You need to feed that baby!”  At every well-child visit, we would ask the same questions but no one ever addressed the hypotonia, or any of the other issues we were seeing.  Finally, at her 4 month visit, the pediatrician acknowledged that there might be some kind of issue but said we just needed to wait and see.  Shortly after that, I went to a La Leche League Conference and had the privilege of hearing Catherine Watson-Genna speak on two issues that ended up having a big impact for us – sensory processing disorder and tongue-tie/suck dysfunction.  I had brought Bekah along with me to the conference, and after the session on tongue tie, I went up to talk to her about Bekah.  She held Bekah and immediately noted her low tone, the way she held her hands, the lack of eye contact, the “funky” way she moved her tongue (my term, not hers) and I felt so validated!  Finally!  She wasn’t sure if Bekah indeed had a tongue tie or not, but recommended having her evaluated by an Ear, Nose & Throat doctor.  As soon as we got home, I made an appointment to see Dr. Biavati in Dallas.  He walked in the room, briefly looked at her tongue, then started looking at her hands, her eyes, and asking about my other kids.  I thought it was very strange that he was examining these other areas when I was there to see if she was tongue-tied.  He finally said, very gently “Well, she is not tongue-tied, but I believe she has something called Niikawa-Kuroki Syndrome” (more commonly known as Kabuki Syndrome.)  I was so relieved!  Finally, we had a name for what we were dealing with.  I think Dr. Biavati was a little confused by my reaction.  I think he expected me to break down and cry, but I was just so relieved to know what was going on that it didn’t occur to me at the time to be upset.  He recommended a geneticist in Plano who was familiar with the syndrome, which is pretty rare.  We saw the geneticist, who agreed with the diagnosis.  



Once we got a diagnosis for Bekah, it seemed that the pressure to give her formula increased exponentially.  Something about being labeled “special needs” seems to insure, in the minds of many people, that breastfeeding is not adequate.  Somehow, people seemed to think that formula would be the “magic cure” that would make her grow.  Thankfully, I had connected with a group of other parents of kids with Kabuki Syndrome.  Two things became very obvious to me, very quickly.  One is that kids with Kabuki Syndrome just don’t grow very fast when they are little.  This holds true whether they are formula fed, breastfed or even tube-fed.  Virtually every parent expressed their frustrations with the gain-lose-gain roller-coaster that our kids were on.  The second thing that was obvious to me was that some of the issues that kids with Kabuki Syndrome struggle with could be helped by breastfeeding – immune system dysfunctions, poor oral motor skills that made eating and talking difficult, digestive issues,  IQ, etc.  It made me more determined than ever to make sure that Bekah got as much time breastfeeding as she could, even if it meant that she had to nurse all day and all night to get in enough calories.  (Lest people think that we could have made things easier on her by giving her a bottle, she struggled even more with bottles.  If we had not worked so hard to make breastfeeding work for her, she would have been on a feeding tube.)  We spent quite a bit of time educating therapists, doctors and nurses.  It was frustrating to feel that we were always telling them what they should already know.  The older Bekah got, the greater the pressure got to stop breastfeeding – we were frequently told that if we would just stop breastfeeding her, she would eat more solid foods and grow more.  What I knew in my heart was that if we stopped breastfeeding her, we would be taking away her best source of nutrition and protection for her immune system with no guarantee that she would do any better with solid foods.  Our persistence paid off though and I am so very glad that we stuck with it.  Bekah is sick far less than most other kids with Kabuki Syndrome and has never been hospitalized, she eats well now and has a very healthy diet, and she talks up a storm!  Breast milk is not magic and she still struggles daily with many of the effects of her syndrome, but I know without a doubt that she would struggle so much harder without the good foundation that 25 months of breastfeeding gave her.


There were several people who supported us throughout the first two years that still hold a very, very special place in my heart.  Some gave regular support and validation, like my dear friend Mary Ann and our amazing chiropractor , who we saw very frequently those first 2 years- Dr. Betsy Taylor. Some were there for a few months, but made a huge impact, like her first OT, Merrit Kazda and others, who answered our questions without judgment and supported our desire to make alternative healthcare decisions for Bekah.  We could not have done it without them!

Some people feel sorry for us because we have a child with special needs.  We don’t feel sorry for ourselves though.  We are so incredibly grateful that Bekah was chosen for us.  We have learned so much from her and have been very blessed to have her in our lives. 

As a lactation consultant, I have also learned a tremendous amount from my experience breastfeeding Bekah.  I have learned in a much more personal way how breastfeeding is about so much more than just the food, or even the bonding.  Breastfeeding is a normal developmental milestone.  Just like any other developmental milestone, if it is skipped, it has an effect on many other developmental processes.  I have learned that, even when breastfeeding doesn’t look like we thought it would, it is definitely worth the effort.  I have a special passion for helping other parents with special-needs infants to breastfeed and I am thankful for the experience with Bekah that has enabled me to help even more mothers and babies.


23 comments:

Kara said...

That is such a beautiful story! Bekah is so blessed to have you two as parents. And you are definitely blessed by her. Thank you for sharing your story Mell!

Apocryphal said...
This comment has been removed by the author.
Rita said...

Such a beautiful story. Arlington is very blessed to have such a wonderful, passionate IBCLC and more importantly such a wonderful mother.
The whole idea of weaning to gain weight flabbergasts me. A doctor would never recommend cutting out all (cow) dairy to put weight on a petite person, so I don't get why they recommend ending nursing.

Daniel said...

I was lucky enough to be a part of For Babies Sake with my first daughter who nursed for 2yrs and 8mo. Mellanie helped us tremendously and seeing her persevere with Bekah helped me to never give up until one day nursing was just a normal part of our daily lives. Even now that Hannah is almost 5yrs old, she has always been healthier than her peers and has been on antibiotics once for a rash and just now has her first ear infection. I owe that all to Mellanie and the other ladies in my group to help me learn so much and to persevere with nursing my first daughter.

When my second daughter was born with Trisomy 18 and several heart anomilies; I remembered what I learned from Mellanie and FBS. I asked before she was born that if she survived long enough to be fed, that I try nursing. She had a severe cleft palate and could not nurse, but I then asked for donor milk, which our NICU provided her free of charge. She was a preemie and delivered via c-section so my milk took forever to come in; not even colostrum came easy to me. I also knew enough to ask for a hospital pump; also free of charge. I pumped my heart out while mixing what little I got with the donor milk. I was so proud the day I gave her a whole feeding of my milk.

With what I learned from Mellanie and FBS, my second daughter Eva had only breastmilk for most of her 3.5 months of life. Never an infection or illness (which is what usually takes these babies). She remained "healthy for her" until the very end when her heart disease took her life.

While that may seem sad, and it is sad that we mourn her, I am proud that I knew enough to fight to give her the very best nutrition and the very best chance at a full life. I know I did that. We took her out in public with us, let others hold her, let her live her 103 days to the fullest, knowing that her perfect food being fed through a tube allowed us the most possible time with her.

Thank you Mellanie, FBS, and Bekah for all the inspiration and knowledge you gave me to give both of my daughters the best that I possibly could. I've even helped several friends through their struggles with nursing and referred several more to Mellanie in Arlington.

Love you and Bekah and miss you very much!

Daniel said...

The above comment from Daniel is really from his wife, Jessica Clearfield. I forgot to change the login.

Annie said...

Beautiful story, Mellanie! Thank you for sharing it.

Deirdre said...

Having worked with you through all of this, I knew yours and Bekah's story, but it still gives me goosebumps. God has blessed you with an amazing little girl and God has certainly blessed Bekah with an awe inspiring mommy. I'm proud to work with you and call you my friend.

~Cherry Blossom Doula said...

Wow! Thanks so much for sharing. Bekah's first few days of life are amazingly similar to my first daughter's. Emma was 3 weeks early, 5 lbs 6 oz, a 2 vessel cord , hypoglycemic, and couldn't keep her temp. up. We got to take her home after 5 days in the NICU. She doesn't have any specific diagnosis and is a healthy, happy 14 year old but has partial hearing loss and vision problems that were present from birth. I nursed her exclusively for 12 months and am so glad I did. Thank God for my thrift store copy of The Womanly Art of Breastfeeding because that's the only resource I had. She used a nipple shield for 6 weeks after birth. I feel very lucky that I beat the odds because the LC were not good and I didn't have a clue what I was doing...I was only a teenager.

Cassie said...

Jessica- what a touching testament you have given. I have a dear friend whose son was taken by Trisomy 18 at one day old. What a wonderful, albeit short in our terms, life you gave her. My friend would have given anything for another 102 days with her boy. I know you treasure them.

Mellanie- I am quite sure we attend GCC together and your beautiful daughter is absolutely precious. What a strong beginning she has! I have worked with families with special needs in the past and a strong-minded, self-educated, sacrificial parent makes all the difference!

Diana J. said...

Thank you for this excellent story! Great thing to share!!

Also, I am going to mention this condition to our geneticist. Our baby, now 18 mos. old, does not have a diagnosis but shares many of the same issues (hypotonia, tongue-tie, developmental delays, reflux, slow weight gain, sensory issues, etc.). Unfortunately many genetic syndromes share symptoms, so they're hard to tell apart sometimes, but I'll mention it. Thanks!!

T said...

Bekah is a beautiful little girl! Thank you for sharing this story.

Barefoot Mama said...

I love this story, and the comments. My son, now 9 months old, had a horrible time nursing at the start. I could not get him to latch as he was a poor sucker, and had limited success with a nipple shield. I finally took him to a wonderful chiropractor that I had also seen with my first son, and he was amazing. He told me to spin in circles as I nursed my son in a sling, as spinning stimulates their brain stem, and causes them to suck. It was the only thing that worked. I spent HOURS nursing and spinning in circles, and over time, we needed to spin less and less. After 12 weeks, things improved. After 16 weeks we got rid of the nipple shield. Today he is a wonderful nurser, and I am SO proud that I did not give up on finding a way to nurse him. I am nothing if not stubborn, especially when it comes to my babies. :)

Tammy

Meredith said...

Wow! Thanks for sharing such an amazing story.

Abby Rose said...

Bekah's only "special need" was to have her mother and father as her parents. She is perfect and whole and God is preparing a way for her that none of us can imagine. congrats to you mom for fighting for her and what is indeed the VERY best for her :)

Marie said...

Your story is so touching. As a mother whose 2nd baby had posterior tongue tie, high palate, and extremely weak oral motor skills, I can totally relate. We had so many "helpful" people giving us advise, totally unaware of the implications of our severe situation. Even after LCs, PT, pumping/herbs/etc, we dealt with failure to thrive. Though my son couldn't take a bottle to save his life, but it seemed the automatic response when people found out we were "still" breastfeeding. Sadly, we are weaning now, at 16 months, but it has been an extraordinarily triumphal journey.
Peace to you momma.

Ann said...

What a beautiful story. I'm sobbing at the moment in response. So great that you stuck to your motherly instincts and didn't give into formula. God Bless. :)

Marla said...

I am SO glad to have read Mellanie's story. My daughter is 3.5 and has cerebral palsy - and I'm still nursing her. (She's hypotonic but never had major latch issues and we never supplemented - we were lucky in that regard. I didn't recognize that something was amiss until she was around 6 months old, although with 20/20 hindsight I know I had suspicions earlier than that.) Bravo to Mellanie and thank you again for sharing her story, as it is SO important!

Karen said...

What a BEAUTIFUL little girl you have! And what a beautiful story! Thanks for sharing it:)

Karen said...

What a BEAUTIFUL little girl you have! She looks so happy. And what a beautiful story of challenge and courage. Thanks for sharing it with us:)

Karen

Nora C said...

What an amazing story, thank you for sharing!

We are currently struggling with my 3 month old daughter's slow weight gain. Our pedi sent us to a GI dr this week. He immediately told us it was not a GI problem and called in a breastfeeding expert. We discovered she has a tongue tie and that is why she's gaining so slowly (well, we hope that is the only reason). I am supplementing with formula atm, but we are using an SNS to supplement. I am also pumping after every single feeding trying to build up my supply. We are waiting for her to have surgery. They want to eventually switch the formula out to my stored breastmilk, and then eventually return to a normal breastfeeding relationship as long as she starts to gain weight. It's more work, but so worth it. I breastfed my last child for 14 months and would like to go longer with her. I was so relieved when they said she had a tongue tie, I had heard of it before and knew that it was fixable. If she doesn't start gaining they will be admitting her to the hospital, so we are in a waiting game now, waiting to see if she gains, and hoping it's just a tongue tie issue.

Your story gives me hope and strength, thank you for sharing.

Teglene said...

Thank you for the awesome post! I can relate to so much of it! I too have nursed a premie (and been shocked about the lack of support and horrible information in the NICU) and have a child with special needs. I know the relief when you get the "label". A beautiful story!
http://thebreastfeedingmother.blogspot.com/

Caroline said...

Thank you for this beautiful post. There is nothing like lived experience in order to help others dealing with similar hurdles. I'm so grateful for your courage and persistance and willingness to share

Summer said...

i feel just so encouraged by reading your story. as a breastfeeding mom to a 16 month old with one on the way, it really helps to even validate my situation, where i know one doing anything close to tandem breastfeeding. i feel sadened that despite your whole struggle, you still had to use the phrase :
supported our desire to make alternative healthcare decisions for Bekah
how sad our country is, that we are DEFENDING the most natural thing in the world- breastfeeding.
thank you again for sharing