Nokuphiwa surgery update – things did not go as planned

If you don’t know who Nokuphiwa (Phiwa) is please start by reading this blog from just one year ago https://janinemaxwell.blogspot.com/2019/03/nokuphiwa-no-koo-pee-wah.html Phiwa was badly burned when she was only a few days old and did not get any medical intervention until last February when we sent her to Shriners Hospital for Children in Boston under the care of the Global Medical Relief Fund and in to the loving home of our dear friends, the Habelow family.

Phiwa did not have any family who could travel with her so we asked a young lady who had just graduated from University in Eswatini and was working in the front office at Project Canaan to go with her as guardian.  A pretty big ask.  Her name is Nokwanda Fakudze and we had known her for many years and had come to trust and love her.  When I asked Nokwanda if she would be willing to take a young girl, whom she had never met before all this started, to the US for several months of extreme surgical intervention, and she said yes.  None of us had any idea where this journey would take them or the people who have come to know and love them both.

Phiwa’s first few round of surgeries was to take skin grafts from her thighs and release her lips (really, it was to create lips).  Her lips had completely burned off as a newborn which impacted her ability to speak (impossible to enunciate without lips), eat and do other things we take for granted by having lips. Those three surgeries were successful and then she came back to Eswatini.

In November 2019 Nokwanda and Phiwa made their way back to Boston for the second major round of treatment and surgery.  Phiwa has a whole in the front left side of her skull that is the size of a golf ball, in fact you can see her heart beating through the skin.  We all assumed that the doctors would want to fix that first, but we learned that they couldn’t do that because of how taught her skin was, so that is why the lips became the first priority.

In November they put a port in her skull so that each week they could inject fluid that would expand her skin, stretching it so that when they did the cranioplasty the skin could be pulled over top of the hole. (I am writing this in layman’s terms so that you can all follow – surgeons please forgive my simple explanation of a very complex surgery). After three months of head expansion yesterday was the big day for the big surgery!  The plan was to take a half thickness piece of skull from another part of her head and insert it in the hole at the front of her skull.  If I understand correctly, both sites would eventually grow the bone back to full thickness. Once the hole was filled then they would take the expanded skin and stretch it over the left side of her head where she had no hair because of the burns. She would get a new hairline on the left side giving her hair all over her head.  How cool is that?

You can't have too many fun hats.

I think those of us who understood the surgery were nervous about it – it just seems so crazy that surgeons could do such a thing.  But the Lord has protected this child for so long we knew that He would continue to do so.  All of the big kids at Emseni did a video call with the girls the night before surgery and Ian prayed over her for peace, joy and safety. But here's the thing about Phiwa – she is never sad, scared, angry or in a bad mood. Don’t get me wrong, she’s still a kid, and can be stubborn about things, but really, she never complained about her skin expansion, never cried from pain and I often comment that she might not be human.

Yesterday as they went in to the hospital she was skipping and singing (see video below). WHO SKIPS AND SINGS when going to have cranioplasty?  Only Phiwa.

We had a video call with Nokwanda, Phiwa and Eileen as they headed to the hospital and both ladies are so good and sending me updates.  Then I got this one from Eileen:

“Dr. B just came out.  He is very happy with how the skin expansion went.  She now has a hairline that goes all the way to the bad ear and back.  He says there is still a section on the back of her head that needs hair.  That will be a small skin expander next round with which he will finish her scalp and construct an ear.  They did NOT put a new piece of bone in her skull - thought it was too risky during this one.  If the skin replacement leaked it would not allow the bone to heal well enough. He said they added another layer of very healthy skin over it and feels she is protected.  We might get out tomorrow since they did not do the bone.  Check up on Monday and/or Wednesday of next week.  Then, in two weeks or so (I am going to ask for March 25 so I can be here in-person), we will have the consult planning meeting to map out her next year.”

What the heck? They didn’t do the very surgery that we thought she was getting her head expanded for?  I was so disappointed, but Eileen was not, she knows that they would only do what was best for Phiwa.  What I do know is that God’s plans are not our plans, but they are always better, so I will rest in that promise.   

May I take this moment to say thank you again to Nokwanda, who really is a Super Woman in my books, and the blanket that she is wearing in the photo below is really her cape. Thank you for your love, your selflessness and your kubeketela.

Elsa and Super Woman save the world.

The girls will come home next month and we will be really excited to have them back.  We will know what the next round of treatment will be after a meeting in a couple of weeks.  We do know that future surgeries include an ear, a nose and hopefully an ocular implant to replace the eye that is sealed shut and non-functional.  Unfortunately, the Habelow’s have moved to Florida, and while they have very generously and graciously kept their apartment rented for the girls to live in during these months, we will need another host home for the next round of surgery. If anyone knows a family or perhaps a retired couple in the Boston area who would be blessed beyond measure to host a very special young gal, who might just be an angel in disguise, please let me know?

Live from Eswatini … thinking about my girls in Boston.

Janine

Update on Nokuphiwa and thoughts from her host - Guest blogger Eileen Habelow

Many of you have been following the journey of a little girl named Nokuphiwa (or affectionately known as Phiwa, pronounced Pee-wah).  You can read more about her story at https://janinemaxwell.blogspot.com/2019/04/violet-or-graphic-content.html. 

When I was first approached about her terrible burns, I felt helpless as we don't take in 8-year-old children. Our age cut off is 24 months, but someone had to do something, and we took action in faith that the Lord would show us the way.   The journey lead us all to Boston, where our friends Eileen and Joe Habelow said "yes" to hosting Phiwa and her legal guardian (our staff member Nokwanda) for an unknown amount of time with unknown emotional and physical repercussions.  

As the girls prepare to come back home to Eswatini and rest before the next HUGE surgical procedure (crainioplasty) in early 2020, we are working on the best possible plan for Phiwa's recovery and future. Please join us in praying for His direction and wisdom.

I thought that many of you would like to hear from Eileen and her family as to how the five month visit with Phiwa and Nokwanda has affected their lives.  Eileen agreed to write from her heart, and I know you will be blessed by her words below.

From Eileen Habelow:

"Phiwa.  She has melted hearts and changed minds.  Just being Phiwa, she has changed the perspective of all who used to have pity in their eyes; but that pity has now shifted to pure admiration.  She has won the ‘favorite’ label from doctors, nurses, and therapists.  Phiwa came here to have round one of many surgeries at the amazing Shriner’s Hospital for Children in Boston.  So, she has begun a physical transformation on the outside - but even when the physical changes are successful beyond measure, nothing will ever be beautiful enough to match her inside self!  Her spirit is so bright.

“That girl” is something we said often with love and awe.  Phiwa does not see herself in a mirror.  Phiwa sees herself just as God has made her – her bubbly energy is uplifting, and her giggles are infectious.  In many ways she is a typical 9-year old little girl who wants to ride her bike, go to the park, tease the dogs, wrestle with her ‘brother’, snuggle with her ‘sisters’, play with Barbies, challenge authority and use the iPad.  Oh… and watch Frozen, Coco, and Lion King until the entire household can recite words, sing the songs, and mimic the dance moves.

But Phiwa is far from being a typical 9-year old little girl!  As a newborn she endured pain we cannot imagine.  She has scars and disfigurements that make her look different and cause others to stare.  While those two things definitely make her not typical, in my eyes there is so much more that makes Phiwa unique and amazing. 

Through the 4 ½ months Phiwa has spent in our home, our church family, friends, and extended friends in Atlanta have blessed Phiwa with gifts.  Everywhere she went, people wanted to help by providing clothing, toys, and even a new hair-do!  Before Phiwa came to America you can imagine she had little to her name, not much to call ‘her own’.  You might think that coming here she would be spoiled by the showers of gifts.  But each and every time she received something, she shared.  She immediately offered a toy to others to have.  She has already gifted me with two of her favorite stuffed animals that I will treasure.  Phiwa is a little girl who comes from little, but is a naturally unselfish giver.

Phiwa is very energetic, but also has a quiet confidence.  When Phiwa went to church the very first Sunday, she went straight to children’s group.  She quickly acclimated and a few children were immediately comfortable with her – friendly and playful.  When Phiwa came home from church she told us she had a few friends already and that there were a few other children who didn’t really play with her this week.  However, she exclaimed, ‘they will play with me next week, though!’  And they did.  Phiwa realized that some children need time.  And she gave them that time.  By the time she had been here a month, we had a birthday party for Phiwa with 10-12 other children and every one of them wanted to be by Phiwa’s side.  When we visited our sister church for the first time, our nieces and nephews took Phiwa into their circle and loved her just by being with her.  We even overheard one little girl exclaim ‘Phiwa is here!  She is finally here!’.  That’s God’s love.

Mark my words – Phiwa is going to do something BIG in our world and it is going to be something incredible.  I can’t wait to watch this little beauty grow and take her place in the world.  God has big plans for Phiwa!

 

And the saying goes that behind every great leader there is a great team.  Well, in this case behind every amazing child there is an equally amazing caregiver.  Nokwanda said yes… even at the last minute.  Nokwanda traveled with a child she had known for 2-months… on a plane ride she had never experienced before… to a continent and country she had only seen in movies.  Nokwanda arrived with a confidence that comes from saying yes to a big God.  Her facial expressions are an open book.  She is full of a love she didn’t even know until now.

Early in their visit, we printed lots of pictures to start our scrapbooks.  One touching moment was when Nokwanda said to me “I now clearly see my role in Phiwa’s life through these pictures”.  Wow.  Nokwanda was naturally nurturing, loving, caring for, disciplining and shepherding a beautiful young Swazi girl who desperately needed her.  But, she needed the pictures to clearly see the impact of her caregiving role on Phiwa.  The connection they have built is with cords that can never be broken.

Our family is forever changed because of this experience with Phiwa and Nokwanda.  All three of our adult children refer to them as their sisters.  Phiwa’s first words after surgery were “where is my brother Eric?”.  Her second request – “where is Max?”  Max is our family dog!  The greeting Phiwa and Eric give each other every single day when Eric got home from work is priceless.  And the relationships forged with our daughters via regular FaceTime, sleepovers in Atlanta with Melissa and a week at home with AnnMarie will forever be a part of our family fabric.

I am not ready to imagine the void that is coming to our home when these two beauties leave Boston.  The girls may leave our city, but the memories and the relationships are forever.  We have become family.  And for that, we are eternally grateful.

1Samuel 16:7 is a favorite verse of mine – “Do not consider his appearance or his height, for I have rejected him.  the Lord does not look at the things people look at.  People look at the outward appearance, but the Lord looks at the heart.”

Wouldn’t it be great if we could all do the same?  In this, Phiwa is the teacher!"
 

Live from Eswatini ... we look forward to seeing what is next for this young girl.

Janine

Nokuphiwa (No-koo-pee-wah)

Nokuphiwa and her BFF Mona Lisa - sweetest photo of all time?

I have never met someone like Nokuphiwa. She is the little burned girl I have mentioned in a few blogs in the past couple of months and I would like to officially introduce you to her today.  She was burned in a house fire when she was only 5-days-old and has suffered with no treatment until today, and she is now 8-years-old. (If you want to read more about Nokuphiwa’s burn story go to https://janinemaxwell.blogspot.com/2018/12/update-on-burned-girl.html)

Nokuphiwa left for Boston this past week where she will receive reconstructive surgery at Shriners Hospital in Boston, in partnership with our friends at the Global Medical Relief Fund.  She was accompanied by Nokwanda (from hospitality department at Project Canaan) and Barry Hickman (our friend and husband of Canadian HFA Board member, Carol Hickman) who flew all the way to eSwatini from British Columbia, Canada to escort the two gals to the US as neither had been on an airplane before.

When I first heard about Nokuphiwa I knew that we had to do something to help, but was very uncertain about how to do it without disrupting (or frankly, scaring) our own children who have already been through so much.  Together with our amazing staff, we worked on a plan (read past blog above) and brought her to live with us back in early December.

Within a single day she was the pied piper of Project Canaan with almost all the children loving her immediately (some of the older boys took a bit longer to see past the scars to her heart), and soon loved by all.  Allen, one of our Sr. Supervisors said, “She is like a Princess who finally found her people”.  And what a true statement that is.

Nokuphiwa is pure joy.  She cares for the underdog and scolds a bully.  She dances and sings like no one is watching, but everyone is!  Honestly, it is as if she doesn’t know she was burned. She is perfect, and beautiful and confident and made in His image, and she knows it. She is not ashamed of how she looks and is quick to take off her hat for photos so you can see her full smile (with no lips). 

Nokuphiwa is missing a piece of her skull that should be protecting a main artery in her head. You can see her heart beat through the skin on her skull. The Doctors in Boston have also identified a “leak” up above her where her eyebrow should be. While Nokuphiwa RARELY cries, when she does, that spot “leaks”. They did a CT scan on Friday to assess her skull issues, and also they are looking to see if the leak is from a mis-directed tear duct?  The whole in her skull and the leak are the two priorities for now. Then further plans will be made.

I have been very careful to not post photos of her face for her privacy sake, but I am going to do so today so that you, the reader, can see where she is starting her surgical journey and you will be able to follow along and pray with us for her. am also posting a video that was sent to me yesterday from Nokwanda. It brought me to tears (again).  But I only cry tears of joy for this little girl because SHE IS JOY.

The first thing I want to show you is Nokuphiwa singing a song yesterday.  Nokwanda sent it to me last night and it’s Nokuphiwa (who didn’t want to learn English, but seems to be learning it) singing “God is so good, God is so good, God is so good, He’s so good to me”.  I am posting this so that you can see her joy, her authenticity and her personality. I don’t think I would be singing “God is so good” as an 8-year-old if I had been living with a burned head for all of my life. Would you?

  

Now … you HAVE to read this next part!

The girls are being hosted by our friends Eileen, Joe and Eric Habelow.  When I asked the Habelow’s for the “BIG FAVOR” of hosting two strangers for 3-months while one of the strangers (and a child) underwent life-changing/life-threatening surgery, they prayed about it, talked to their Pastor to get support from their church and then said yes.  THREE weeks before the girls were to arrive at their house, their pipes burst while they were out of town at the Superbowl and it “rained” in their house for days before they got back (to Boston in the dead of winter). They got home to 3.5 feet of water on the top floor and bottom floor of their house and the house looked like a rainforest with water pouring out of ceiling lights, walls and ceilings.  EVERYTHING that they owned was destroyed by water, EXCEPT for all their photos albums and sentimental items. The only wall in the house that was not wet was the one that housed the electrical box, which saved them all from electrocution when they walked through the house testing lights switches. 

In the past three weeks they found a new home to rent, bought furniture, set up house and met Nokuphiwa, Nokwanda and Barry at the airport with more joy and love that can be imagined.  Tear are pouring down my face as I type that. We have done video calls from their house and their car and I just can’t stop crying tears of joy over all that I am seeing happen.  And she hasn’t even started surgery yet! 

Serving God is not easy, but the blessings that come with it are “exceedingly and abundantly more than we can ask for or imagine”.  Just ask Eileen and Joe! 

Special send off service last Sunday at church

Praying for the girls before they left

She insisted that I take a photo of her with the RCMP moose that Uncle Barry got her

FAREWELL!!  See you in May!

I LOVE the way she laughs so hard

Their first time seeing snow!

What are you being asked to do today? Who are you supposed to help? Who are you supposed to be a blessing to?  Please don’t hesitate – just do it.

Thank you Barry Hickman for coming and being the escort for both Nokuphiwa and Nokwanda. Thank you Nokwanda for stepping up to be the guardian for this 8-year-old girl from “deep Swaziland” for the next 3- months of grueling surgery.  Thank you Eileen, Joe and Eric for hosting the girls for the next 3-months, for taking them to Doctors appointments, CT scans and Chinese food. 

Live from eSwatini … I LOVE my life.

Janine