Adopting a Child with a Lipomyelomeningocele

April 20, 2015 April 2015 Feature CNS, Family Stories, lipomyelomeningocele 1 Comments

We knew we felt called to adopt, and called to China, but when we found out we’d need to go through the special focus route, we were afraid…

Special needs? Those words encompass a lot.

Locally we had a friend who had a precious daughter from China with spina bifida. This friend had spent a lot of time with me talking it all out, and give me the 4-1-1 on everything I needed to know. Because of her willingness to share so openly we weren’t afraid of this special need. I know many families who do not share their children’s stories and special needs, I absolutely respect those families but for us, we said yes to Molly and Wills because of the families that had gone before us, and were wiling to share.

In the spring of 2013 we found her file through Annie Hamlin’s site, Wonderful Waiting Kids. She was also listed through our agency as well. We locked her file immediately and began compiling info, asking questions, and praying whether or not she was ours. Y’all it was hard. We begged the Lord for clarity and that we wouldn’t make a decision out of fear. Molly was a 2.5 year old in China who didn’t walk, had clubbed feet and a large, large mass on her, where was it? The picture was so odd that we didn’t know where it was. We assumed her back, but maybe it was her belly? We asked for a better picture and when it came, I Blown away at how a little one could have such a big mass, and live so long with it.

The Lord did give us clarity, and we said yes to Molly Zhen Zhen Gotbeter. We traveled in January of 2014 to adopt her. I need to be honest and say that when we undressed her for the first time in our hotel room in Kumming China I had to take a deep breath when I saw it. It looked so much bigger than even in the pictures. “Ok Lord, here we are..”  Deep breaths.


We enjoyed China, and we adored Molly. The trip was wonderful and once home we all got settled and began the journey of more appointments than I thought was possible for one family. Pediatrician, adoption clinic, sedated MRI, urodynamics, blood work, endocrinology, gastroenterology. orthopedic surgeon, neurosurgeon and more.

What was that mass on her back exactly? The words we heard on February 25, 2014 weren’t exactly what we wanted to hear. Molly had an extremely large lipomyelomeningocele. Inside that mass was her spinal cord, an extra boney spike, an incomplete spinal cord fluid pouch, missing vertebrates and more. Deep breaths again. “Lord, you are good, and faithful and although this isn’t what we wanted to hear we are trusting you!”


After lots of prayer and research, we decided to leave our state and head to Boston Children’s so Molly could see the world renown Dr. Warf, and the number one neurosurgery team in the world. Dr. Warf confirmed that what Molly had was very complicated and would take a long time to repair. He had one case that morning and then after that it would be Molly all day long. The surgery was successful and Molly did well. Afterward though, Molly had many, many complications and we were inpatient for 40 days. Three surgeries total: the initial, a wound clean out from an infection, and a repair of a spinal fluid leak. Many MRIs, ultrasounds, dozens of failed IVs, PICC line, NG tube and more.

We filed all the specialist in one by one to see our precious girl and give us guidance on where to go next.

Although our time at Boston Children’s was incredibly hard, it was also one of the most amazing times of my life. Through all of those trials we saw the Lord time and time again show up, and show out for Molly. I have never been in a place where daily I had to call out to him, read scriptures over her and just cling to his promises. The number 40 is used 146 times in the Bible, it rained for 40 days and 40 nights with the great flood, beginning with Ash Wednesday, we walk towards the cross for 40 days through Lent. The number 40 time and time again symbolizes a period of testing, trial, or probation. Although hard, that time was also sacred. One on one time with Molly, not ever having to share me, or wait, it was the ultimate attachment situation. I literally laid in her bed with her for 40 days. What a journey to reflect on!


Now, a year post-op Molly is doing well. We now catheterize her every four hours, do a bowel management regiment nightly with a foley catheter, some baby soap, and 300 ml of water. She stays in panties all day and rarely has an issue.

We corrected her feet up in St. Louis with Dr. Mathew Dobbs through the Ponseti method and have returned to Boston Children’s several times for testing and follow-up appointments. We’ve had one big hospital stay the week before Christmas for a bad kidney infection that bought us a week there, and 10 more days of Meropenem with a PICC line at home. Her urine is daily infected, she has reflux in her kidneys, wears tiny SMO braces in her shoes and is super tiny. The size of a 2 year old at 4. Molly walks totally unassisted, and although she’s a little slower than kids her age she keeps up just fine!

Molly is so brave though, and adorable! You would never know when you see her what her little body goes through on a daily basis. She is smart as a whip and feisty. She may be little, but as her surgeon Dr. Stone called her in Boston, she is “tiny but mighty”.


I know that Molly’s troubles aren’t over, and although I do hope we don’t have another period of 40 days where we are all tested in what seems like the wilderness, we will continue to walk this path with her, praising God for all he has done and what he continues to do in little, Mighty Molly’s life.

We are headed back to China to adopt another little one in a few weeks with spina bifda. I would love to chat with anyone considering this special need. God is able!

— guest post by Brittan

One response to “Adopting a Child with a Lipomyelomeningocele”

  1. Marta says:

    May God bless you and her always.

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