Hope for Hannah - Life Saving Surgery

Hello everyone,

It is with a heavy heart that I request your support. No words can express the anguish and feeling of helplessness that a mother experiences when her child suffers unbearable pain. My life has been sadly torn apart and I am unable to do much to keep it intact. My name is Fatima and I am a mother of four beautiful girls. Life has been extremely difficult for us since my eldest daughter, Hannah was diagnosed with rare medical conditions.

I would like to introduce Hannah to you. 

Hannah is a 22-year-old girl who is a light to all who know her. She is kind-hearted and generous and has a deep passion for life. In 2020, she graduated with an honours degree in Psychology but due to her medical condition she was unable to pursue her masters in Neuroscience and Psychiatry. 

 

She has been coping with three exceedingly rare conditions.

 1. Superior Mesenteric Artery Syndrome (SMAS), which is caused when the third part of the duodenum is compressed between the two arteries aorta and supermasentric artery  (a very rare disease that affects 0.13-0.3% of the population).

 2. Nutcracker Syndrome (NCS), which is the compression of the left renal vein between two major arteries known as the aorta and the superior mesenteric artery.

3. Gastroparesis (partial paralysis of the stomach) a long term chronic condition where the stomach cannot empty itself of food in the normal way. Basically 100 percent of her stomach contents ideally needs to move into the intestine within the hour but with Hannah's it takes over 100 minutes for food to go through.

 

Her illness began in 2015.  Since the past seven years, she has suffered with severe abdominal pains and pain in her upper left quadrant along with daily bouts of nausea, bloating and extreme fatigue. This has resulted in a drastic decrease in her dietary requirements over the last few years and thus she has lost a lot of weight. 

 

Around four years ago, she was rushed to the Emergency Room with complaints of severe and uncontrollable left flank pain. The doctors were unable to diagnose her ailments. They googled her symptoms, consulted experts to finally inform us that she had Nutcracker and SMAS. We froze with pain on hearing this, but I was not prepared for what was to come next. They then apologised stating that they “were unable to help”. 

In June 2020, her gastroenterologist placed/inserted a feeding tube inside her stomach so that she could gain some weight. As her luck would have it, it only made her more nauseous as she was unable to tolerate the feeds.She encountered severe pain.  With time running out we are now left with no option but to go down the TPN route.

Total Parenteral Nutrition (TPN) is intravenous feeding to ensure that nutrition enters the body through the major  veins. For patients who do not have a functioning GI tract, it is a useful mechanism to ensure that their bodies get the necessary nutrients.

 

 

So far, I did not have to bother much about the cost of the medical treatment as insurance cover took care of it. However, things turned against us in January this year (2022)  when out of the blue Hannah’s insurance company concluded that her rare vascular compression syndromes were congenital, genetic or a connectivity tissue disorder. This meant that they would no longer pay for any of her future treatment/surgeries. This has been a heavy blow to us as she requires urgent treatment which is not only exorbitantly expensive but can only be carried out abroad.

Frankly speaking, we have left no stone unturned. We have exhausted all avenues to convince the company that the illness is not congenital. Surgeons and doctors have written to the insurance company explaining her medical condition but it has fallen on deaf ears.

Right now, I feel abandoned, dejected, and disheartened. I am desperate to give my daughter the chance of a better life. This is the least that a mother can do for her child.

So far, my daughter has had no TPN and has lost more than 3 kgs in a week. She currently weighs 37kg and BMI of 15.  As a mother it is extremely heartbreaking to watch her in constant pain and misery. This treatment is unfortunately, critical for her survival.

 

 

Upcoming Surgeries:

Hannah’s upcoming surgeries will be performed in Florida, United States of America. Professor Darwin Ang who specialises in vascular compressions has agreed to conduct the surgery at Ocala Trauma Health Center. The “Duodenoduodenostomy” will relieve the SMA compression and open the renal vein for NCS. Individuals who have undergone the “Duodenoduodenostomy” surgery have recovered well
with minor complications and immense long-term benefits.

 Duodenoduodenostomy article:

https://drive.google.com/file/d/1MWiEomgIiS0Rt73tK5PWQDSDvSYDiS-7/view


It would be a dream for Hannah to be able to eat a complete meal with her family without enduring any pain or side effects. She is hardly eating 200 calories a day. 

We are therefore requesting your kind heartedness in helping us raise funds for her medical expenses. We truly appreciate your contribution, whatever the amount may be.

Also, please share our story with your family and friends. This is a humble request from a desperate mother.

We thank you for your generosity. May your home always remain blessed.

Hannah's family