Three Inspiring Stories of Courage

 

Three stories of courage are highlighted in Orlando Family Magazine’s annual tribute to the medical community.

The first example relates to a mother, Eva, for her courage in opting for a delicate operation on the spine of a 19-week old fetus. The operation is called in-utero surgery. It is performed on a fetus that is diagnosed with spina bifida.

Eva and Mia Isabella

The first sixteen weeks of Eva’s pregnancy were uneventful. But then Eva and her husband were told that her latest test results showed some abnormalities. They were referred to a clinic for high-risk cases where they learned that the baby had spina bifida.

Eva heard about Dr. Cole Greves of Winnie Palmer Hospital for Women & Babies, located in Orlando Health. Dr. Greves specializes in fetal medicine. Orlando Health, the first clinic in Florida to perform in-utero surgery, is in close proximity to Eva’s home. This was an added incentive for Eva to see this physician.

One of the foremost fetal neurosurgeons in the entire world, Dr. Samer Elbabaa,  is associated with Orlando Health. Dr. Elbabaa explained that in-utero surgery does not cure spina bifida. It does, however, give the baby a chance to walk unaided or with some assistance.

About Spina Bifida

Spina bifida begins at the onset of pregnancy. The tissues that form the neural tube do not close completely. This results in an opening in the vertebrae. This, in turn, affects the central nervous system. The defect can occur at any point along the spine.

Depending upon the degree of the defect, the symptoms may be mental or physical. It is usually necessary, in cases of spina bifida, to remove spinal fluid from the brain. According to Dr. Elbabaa, in-utero surgery reduces the need for this procedure.

About In-Utero Surgery

Mother and baby must meet certain criteria in order to qualify for surgery. For example, the procedure must take place within nineteen and twenty-six weeks of the pregnancy.

Eva met all the requirements and despite the risks involved, opted for the surgery. Both doctors Elbabaa and Greves perform different aspects of the surgery, independently of each other, in accordance with their specialties.

First Dr. Greves begins the procedure in a similar fashion to a Cesarean section. The uterus must be opened and the fetus set in a specific position with its spine exposed.

Dr. Elbabaa then takes over performing microneurosurgery. This involves dimming the lights and using a microscope to repair the defect. Extremely high magnification is required.

Dr. Greves takes over again and closes the uterus and the mother’s abdomen. Eva’s surgery was the fifth to be performed at Winnie Palmer Hospital for Women & Babies.

A Truly Happy Ending

Eva has the distinction of carrying the baby for thirty-seven weeks. This is the longest period thus far for a fetal surgery patient. The baby, Mia Isabella, was birthed through C-section.

According to Eva, her baby is perfect. She said that she is normal in every way and that nothing abnormal can be detected. She told the Orlando Family Magazine that the surgery team does not feel a shunt placement will be necessary at a later date.

Eva said that she and her husband are forever grateful to the doctors, their team, and the hospital.

Yet the doctors compliment the mothers who, they say, are the real heroes. The doctors cite the special bond that develops between the mother and the fetus. It manifests in their dedication, courage, and commitment.

A Second Case of Courage

Kayla Cason describes the hardships her daughter, Maddalena,  has had to endure in the first two years of her life.

Kayla developed placental abruption during her pregnancy. The disorder causes the placenta to separate from the inner wall of the uterus depriving the fetus of oxygen. In addition, Kayla was diagnosed with pre-eclampsia, a condition that causes high blood pressure and often results in fluid retention.

As a result of the two disorders, Maddalena was born eight weeks prematurely via an emergency C-section. The doctors reported that the baby was not breathing at birth and they worked on her for six minutes before moving her to ICU. They also explained that Maddalena was stricken with bleeding in her brain.

When Maddalena was fifteen months old the doctors delivered the grave news to Eva and her husband that the oxygen loss at birth caused spactic dipegia cerebral palsy. They told the grieving parents that their child would never walk, talk or eat normally.

Nemours Childrens Health System

 The parents enrolled Maddalena in a Nemours clinical study. Nemours is a non-profit that works with 250,000 children annually. Its focus is on physical therapy that is designed to improve the motor function of children diagnosed with cerebral palsy.

Maddalena has proven to be a willing and determined subject according to several rehab specialists at Nemours. She reportedly has made excellent progress in the few months she has been attending the sessions.

Rehab consists of two weekly sessions of play activities, each specifically designed to help Maddalena work on different foot positions or stepping sideways without being helped by the therapist.

Kayla is an occupational therapist as well. Kayla and her daughter work at home on various aspects of the rehab program. It is very likely given the progress Maddalena has shown in such a short period that she will be walking on her own in the very near future.

Kayla marvels at the things that Maddalena has been able to accomplish such as beginning to crawl, reaching up to stand and walking with the aid of a gait trainer.

Just watching her daughter perform each difficult task has taught her never to give up.

The Watchman

One of the technical advances highlighted by the Orlando Family Magazine this year is The Watchman. It is not one of the new wristwatch monitors but an FDA approved implanted device that is a substitute for common blood thinners.

It takes courage to be “one of the first” implant recipients, but eighty-one-year old Russel Hope opted for the implant. His Watchman device was implanted in January 2018. Since the operation, Russel is no longer dependent on the blood thinner, Coumadin. He said that he is delighted with the results.

About AFib

The American Heart Association estimates that AFib (atrial fibrillation) affects approximately 2.7 million residents in the United States.

AFib causes disruption in the electrical signals that maintain the heart’s rhythm. This does not include symptoms caused by a heart valve defect (mitral valve prolapse).

There is a danger of blood clots forming due to the lack of blood flowing regularly through the atria. The patient is then at risk of having a stroke.

 Thanks to the advent of blood thinning medications such as warfarin, the risk of strokes have been reduced to less than two percent. On the other hand, if blood thinners are taken over a long period of time, there is a high risk of bleeding that could be fatal.

About The Watchman

Studies have shown that forty-five days after receiving the Watchman implant, nine people out of ten had received permission to stop taking their blood thinning medication.

 Blood clots that are responsible for strokes in people with AFib usually occur in the left atrial appendage.

The primary purpose of the Watchman is to stop the formation of clots by plugging up the atrial appendage. This is an excellent alternative for AFib patients who cannot tolerate blood thinners or prefer to avoid anticoagulants.

Clots forming in this area are generally quite large and therefore can be life-threatening. According to one of the doctors who has performed several implant operations, the Watchman may be responsible for opening up a new field of medicine.

 


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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