The story of our little angel, Miane Monique du Plooy

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Mommy and Daddy struggled for 5 years to fall pregnant. After a lot of tears and various treatments, they received the long awaited news that they are expecting a baby!! Everything went very well and the whole family counted the weeks to the 7th of January 2016.

At the 24-week pregnancy gynecologist visit, the doctor noted that Miane’s brain showed some form of abnormality. The one ventricle of her brain was 1mm larger than the other and her cerebellum 2mm too small. We were referred to the Fetal Assessment center in Pretoria. The Professor indicated that Mia would be in a vegetative state and that she should be aborted. Mommy and Daddy (and the whole family) were devastated and decided to get more opinions. Three more doctors indicated that they would not recommend abortion and that Mia would only “reach her milestones slower” than other babies.

Mommy remained adamant to not abort the baby she waited for, for so long. Our little angel was born on Thursday morning 7 January 2016. Many family members were waiting in front of the theatre door. Daddy came out of theatre with beautiful Miane in his arms. She was completely normal and had an Apgar count of 9!! We were then told that Mia had to go to NICU as she was “a lazy breather” ………. a few hours later we were told that Mia could not suck and that they would have to tube-feed her. Mia remained in NICU for 11 days.

A couple of weeks later, one could notice that Miane was growing slower than the other babies; that no matter how much tummy time exercises were done, she could not hold her head up and that her eyes were also unable to follow any movement. The journey with many occupational therapists, speech therapists and physiotherapists was everlasting.

We were told at one stage that Mia does not have a top palate and that she also could not open her mouth as her facial joints were underdeveloped. All these findings were later proven to be incorrect. Mommy kept on feeding Miane with a syringe.

Miane still cannot blink and has no tears. She started having very dry eyes and eventually ulcers formed on her cornea. Amniotic membranes were implanted and we were told that Miane was blind.

We had to start placing various eye drops into her eyes every hour on the hour 24/7. Mommy, carer, granny and grandpa took turns around the clock. All we wanted was for our little angel to be able to see for herself how beautiful she is!!

Miane had several eye operations and at one stage we were told that the doctor may have to remove her right eye completely!! We never stopped praying and placing drops into those beautiful eyes!!

Miane was only 8 months old when mommy and daddy separated to get divorced. Mommy, Miane and her carer had to move in with granny and grandpa.

All sorts of therapy were tried and tested and on 17 June 2017, Miane received stem cell treatment in San Diego. This treatment made a MASSIVE difference to Miane’s well-being!! Miane starting moving her arms and legs; nodded her head; smiling and becoming a real little person! Yet she still could not keep her head up, sit, stand or even place weight on her feet.

Therapy continued……. Neurogenesis and Hyperbaric treatment were continued at a cost of R20 000 per month. Miane progressed slowly but surely. She started rolling onto her tummy!! Treatment started to work and Miane could now swallow properly! Unfortunately, financial constraints resulted for us to stop this treatment until we could afford it again at a later stage.

We were adamant that Miane should regain her sight. We met with Dr. Pauw of the Pretoria Eye institute and on 9 February 2018, Miane had a corneal transplant! Again the hourly eye drops started; the waiting from one week to the next to hear whether her body is rejecting the cornea or not. What a nerve-wrecking time the last 6 months has been!! Miane was VERY unhappy when the new cornea formed an ulcer! She had to go to theatre again and Dr. Pauw indicated that this eye which we knew she could definitely at least differentiate different color

of lights with, had to be taped closed for at least 6 weeks!! We also had to see Dr. Pauw every Monday morning to ensure that her body was not rejecting this new cornea! Miane could not understand why she was back in a dark, black world! If everything goes well, Dr Pauw promised to do the other corneal transplant before the end of 2018……………before Mia’s 3rd birthday.

Mommy has gone through feelings of hurt, guilt and much too much heart-ache to see her reason to live, suffering to this extent. We all constantly worry how we are going to get the financial assistance to get Miane all the available treatment she deserves.

And then the call came!!!!!!!!!!

Mommy’s phone rang on Monday night. It was a person from Round table saying they know about Miane’s story of her little life!! They know she is now 2 years 7 months old and still cannot sit, stand, walk or utter a word. They know that Miane is Shandre’s reason to live and they are prepared to assist in any which way they can!!! Mommy could not stop crying!! There are some good people out there prepared to assist!!

Round table is prepared to have a Golf day on the 10th of October 2018 – in aid of Miane!!!!!

In the meanwhile, life has to carry on and we must keep on keeping on!!

Miane had an MRI and EEG last week. Although the final results are not available yet, it clearly shows that there is no more water on her brain and that her brain has developed to some extent!! The brainstem is still underdeveloped and some vascular systems also need to be strengthened.

Miane started ozone treatment today. This is a way of getting more oxygen to her blood and will definitely improve her prognosis!! Stem cells of America has also phoned and indicated that they are prepared to do the “top-up” of her stem cell treatment ASAP at USD12 500!! This is USD7500 less than 2017!!! Flights will be about R60 000 and the stay for 3 nights about USD1000.

Miane will need more treatments with the physio, occupational as well as speech therapists. Hyperbaric treatments, etc. etc.

We have no idea how we are going to cope with the way forward! We have no idea how we have coped thus far…………. taking into account that daddy found himself a new family, wrote Miane off and does not contribute to Mia’s life at all…….

Yet we remain adamant to assist Mia with as much treatment and prayers as possible. Our little miracle angel deserves the best life ever!! We love her with all our heart and we are prepared to go to the end of the world to help her to have the life she deserves.

We are hoping and praying that there are people out there that will find it in their hearts to help our little angel Miane in any which way they can.

May God bless you in abundance – just as He did when he gave us our little Miane.