On May 31st, 2012 the Maxwell family boarded a plane and moved to eSwatini (formerly known as Swaziland) to live at Project Canaan. I hope to update my blog on Saturday mornings and share, as honestly as I can, the highs and lows of our life in Africa. We are living on a farm in a remote part of this tiny Kingdom and are serving the community as well as the orphans and vulnerable children of the nation. Thanks for joining us.
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Saturday, March 7, 2020
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
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
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.