Hydrocephalus and Baby Hope

September 29, 2014 Advocacy, hydrocephalus 4 Comments

In the world of adoption advocacy, I’ve kind of become the mom that everyone asks about hydrocephalus. When a parent is reviewing a file of a hydro baby and has questions or is looking for a medical team to take a look, I always seem to get tagged in their advocacy post. “Kelli has a hydro baby and lots of info.” I try to tell the good, the bad, and the ugly of hydrocephalus and pass along the information of our amazing neuro team at the Mayo Clinic. I forward a list of questions to ask with every update and a checklist of how to do a medical expedite as it’s imperative that hydro babies be treated immediately. I’m not a medical doctor. I’m a journalism professor. But I did listen carefully to everything our neuro team explained to us and continue to do research on hydrocephalus. For us, the farm is full of kiddos and animals and busy-ness, but I always feel like I’m doing something for the greater good of one less orphan in the world if I’m able to help just one hydro baby come home to a loving family and top-notch medical care.

Only a few days ago I was tagged in a post from a mom considering a beautiful little hydro girl who was untreated. In the world of hydro babies with pooled cerebrospinal fluid, “untreated” isn’t the best of terms to see in a file. We talked and I forwarded the info to our amazing neurosurgeon at Mayo. I later heard back from this mama that the neurology folks took a look at this baby’s file, MRI images, and they had a really good prognosis for her! Praise God! This family sent in their Letter of Intent to adopt her! One less orphan! One less hydro baby awaiting surgery! I was ecstatic! As a family, we prayed for this growing family and for this little girl. I woke up this morning over the moon knowing that yet another hydro baby had found a chance at love and life.

Yet I go to bed tonight grieving. To be quite honest, I choked back the tears when I put my six babies to bed. I cried as I loaded the dishwasher and these tears don’t seem to want to stop as I type this.

Another friend in the adoption community sent me a message today asking me about a little girl with hydrocephalus. A video was included with her file and this 14-month old beautiful little girl was happy, walking, smiling, and talking! I was amazed at how busy she was for being untreated! She was beautiful! She deserved a mama and baba! And guess what! Someone was considering her to be their baby!

Hope

But then an update came.

This beautiful little girl, whom Lifeline Adoption Services has named Hope, can no longer sit on her own, or giggle that silly baby giggle, or even suck on a bottle. She was left untreated and without anyone to fight for her, and she suffered what is believed to be a massive stroke caused by her special need. Now, baby Hope, has little hope at all. Half a world away in an orphanage, nannies feed her by dropping milk into her mouth. Every drop is difficult to swallow. According to the update, she has complete loss of function.

Baby Hope has little hope. A beautiful little girl who only a few months ago was giggling and talking and walking down her orphanage’s hallway wasn’t treated for her special needs while she waited for her mama and baba to find her. She had no one to fight for her. And so now, I cry for her. I know that my friend who sent the message is crying for her as well. She deserves that much. She deserves someone to cry out for her!

And so tonight, half a world away, two adoptive mamas and an adoption advocate sat down and via social media messaging discussed how we could get her the very best care in her final days. A little girl that none of us know and here we were trying to find a hospice home for her. In all reality, I think any of the three of us would have jumped on the next flight to her province to hold her, cuddle her, and whisper in her ear how loved she is in these final days of her journey here on Earth.

Baby Hope deserved hope! I will forever shout it from the mountain tops! These children matter! Children like Hope…..they matter!

We don’t know if the orphanage will allow Hope to be released into a hospice or special care facility, but we’re praying that they will. Please join us in praying as well. Please pray that baby Hope knows just how loved she is even if we are half a world away.

Hydrocephalus babies need to be treated sooner rather than later. The longer they wait for a shunt or for a simple surgery that allows for the cerebrospinal fluid to be naturally absorbed, the more difficult and the more problems that can occur….the more chances there are that things like this will happen. The fact that our beautiful MeiLi survived 2 1/2 years untreated is a miracle in and of itself. Hydrocephalus babies need to be treated as soon as possible and they need to be medically expedited just like thalassemia babies and heart babies. Baby Hope needed a medical expedite and she needed someone to fight for her.

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So now, WE will fight for her. Please join us in our fight and join us in prayer for this little girl. She deserves that much.

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~Guest post by Kelli, a Hydrocephalus Mentor Mom



4 responses to “Hydrocephalus and Baby Hope”

  1. Mattie says:

    I am a hydro mom. I took care of my micro preemie hydrocephalus miracle until a point came that I had to come to a realization that for both my kids it was best to let my mom adopt him. Hardest decision ever! However reading this helps me feel like I made a big difference making sure he did not go untreated ever & when it became to much for me to handle on a full time basis I put my pride aside to assure his treatment would continue. I have never heard of it left untreated until reading this & now I cry with you for Hope.

  2. Ger says:

    This is hard to take, so sad. I saw Hope’s profile and her video is the most precious of all. She seems so joyful, smart; and actually appears healthy in the video. Perhaps a miracle, God Hear our prayers.

  3. Lisa H. says:

    My heart has been breaking for the precious little one too! Seeing what a bundle of life and love she was in her video and then reading the report on her prognosis after the stroke made me feel ill….It is SO WRONG that these things happen in our world! I’ve felt so frustrated and helpless and would love to help in caring for her in some way. Thank you for taking the initiative on this!

  4. Lisa H. says:

    Any updated news on caring for Hope?

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