(A Miracle Baby)

Athanasia Nicole Higgins was born on Monday afternoon, August 9, 2004. She was delivered very prematurely at 28 weeks, due to staphylococcus Aureus bacteria, commonly referred to as Strep-B Staff infection. This was contracted during pregnancy and resulted in an emergency Cesarean delivery, eight weeks early.

Her beautiful Greek name Athanasia was given after her grandmother, and Nicole was given after her grandfather, "Nicholas"; although, mommy and daddy call her Sia for short. She was born weighing 2lbs, 11 oz. and the first three days were the most critical due to overwhelming complications that seemed to be more than she could possibly defeat. The only positive factor was that she was a girl. Statistically and medically she favored far better chances for survivability than a boy under these circumstances. 

Initially, Sia was fighting Methicillin Resistant Staphylococcus Aureus (MRSA); placing her in an isolated room and living on a plastic covered warming bed. The precaution was to prevent exposure or infection to other preemie babies in the NICU. The only physical contact allowed for comforting her was through surgical gloves, stroking her little non-bandaged hand. Secondly, she had intra-ventricular hemorrhaging (bleeding of the brain) "Class IV", on the right side and “Class III”, on the left side.  Her pigmentation was sickly discolored from meningitis, and her heart PDA valve was not yet closed (typical of preemies). Lastly, she was having periodic seizures 24/7.

Sia lay helplessly on her warming bed with IVs from every appendage with a heart sock monitor on one finger, EKG monitors on her chest, feeding tubes through her nose, a resuscitator down her throat, large bandages over her eyes, and fighting every step of the way. Helplessly and hopelessly, we watched vigilant over her every single day and night having no control of the situation, or rest for the weary, just praying for a miracle.

Dr. Cesak, Dr.Gallagher, and Dr. Carter, the three primary neonatal surgeons managing and operating the Cape Fear Valley NICU, regularly kept us a breast of Sia’s situation, and what to expect from best case scenario to worst case scenario. Each of them assured us, they were doing everything they could be doing, medically, procedurally, and medicinally possible to get her well.

On Thursday, August 19, 2004 Sia was improving slowly from MRSA, meningitis and seizures; however, she was now dealing with another matter caused by the Class III & IV hemorrhaging. Hydrocephalus commonly referred to as fluid or water on the brain. It became very prevalent and unfortunately, our next primary concern.

Sia’s head circumference swelled twice its normal size due to blockage from cerebral fluid trapped behind blood clots. Additionally, some cerebral tissue had deteriorated to the point of non reconstitution, due to the lack of cerebral fluid flowing freely to the other half of the brain.

Doctors informed us of many possible developmental and cognitive deficiencies due to this deterioration and hydrocephalus, but unfortunately we will not know the true extent of the damage until she has fully developed, post adolescence. Preventive measures were taken to reduce swelling of the head. First, doctors attempted a series of spinal taps to draw off excess fluid but to no avail. Secondly, on Monday, September 13, 2004, her first neurosurgery, a diaphragm-reservoir was implanted in her brain, atop of her head in order to extract excess fluid with a needle and syringe, but it was only used as a temporary solution that lasted three weeks. (Note the left picture)

Shortly after the reservoir was implanted, Doctors were unable to extract enough excess fluids. The ventricle filled with fluids on one side and swelled 1/3 of the brains size. Due to the severity of her hydrocephalus and pressure in her head, she required immediate neurosurgery a second time to remove the reservoir and embed a ventriculo-peritoneal (VP) shunt. This was a critical decision. She could have died from the surgery, or she could have died without the surgery. The two main perquisites for a successful surgery was weight and age which were the two most concerning factors against her. A VP shunt is a catheter with a very fine rubber tubing (thread like) w/ pin holes fed through the ventricles of the brain on one end (Ventriculo); and another very fine plastic tubing (straw like) from the catheter to the belly on the other end (Peritoneal), allowing excess fluid trapped in the brain to withdraw and absorb into the body. On Friday, October 8, 2004 her surgery was a success, implanting the shunt just behind her right ear.

A day immediately following surgery, Sia took a turn for the worst and went into a Coma. Her skin color seemed deathly gray; her breathing was exceptionally shallow and required resuscitator assistance. Her heart beat was weak, and required caffeine injections into her IV; seizures occurred once in a while on the EKG monitor, and her body lay limp and still as if she had already passed into the afterlife.

Linda and I were completely beside ourselves, demanding answers from the Doctors, surgeons and medical teams. Although, nobody had any answers except for Dr. George, the pediatric neurosurgeon from Duke, suggesting that we wait to see what happens after the dust settles; we have done and given everything we can to fight whatever it may be. 

All our family members from both sides, accompanied by a few close friends of the family had arrived earlier for moral support, once hearing of Sia’s Coma. Out of desperation and hopelessness; we decided to call Fr. Kostas, our Greek Orthodox Priest to come and baptize our daughter in the event anything tragic would occur to her.  He arrived to Duke and came next to her bedside at the Duke University NICU for the baptismal service. Once family, friends, and some of the medical staff crowded around out of reverence, he then performed the blessing with holy oil. Once the baptism was completed, the medical staff asked respectfully for all family members and friends to return to the waiting room, due to the hospital rules.

I stayed by my daughter’s side; although, it was less than five minutes that Sia began to cry. It was the first time that I have ever heard her cry since her birth, it was loud and boisterous. I called the nurse and asked her what is going on, and she turned to me and said, “I guess she doesn’t need this anymore pulling out her resuscitator. She then checked her vitals, her heart was pumping strong, her bowels were working, and her breathing was strong and unassisted. I immediately ran into the waiting room to tell everyone of the miracle, and Linda and I returned while the Doctor annotated on her chart; means of recovery - divine intervention.  (A testament to a true miracle)

Shortly thereafter, a few days later we returned to Cape Fear Valley’s NICU for recovery and release. Sia came home accompanied with a heart monitor and CPAC breathing machine. This kept us awake every night for the first three months, but she eventually became independent of these machines progressing physically and medically. Unfortunately, she had little to no cognitive abilities or core strength and required assistance for everything to include sitting up, rolling over and feeding.

The first year was a blessing at first accompanied with challenges, changes of priorities and learning how to be good parents while caring for a special needs child. Our main concern and biggest fear daily was sickness and/or problems with the VP shunt. We started scheduling her for physical therapy and occupational therapy right away. As Sia grew older and bigger, developmental deficiencies began appearing before us. The first and most apparent was her eyes. Sia’s Ophthalmologists, Dr Young, from Duke University diagnosed her with strabismus and encouraged us to patch until she was old enough to have surgery in both eyes, which came one year later. (Note strabismus on left picture and post surgery picture on right)

On Friday, May 20, 2005, Sia was taken to Duke for a routine CT scan and checkup, but it turned out to be an unfortunate discovery of a VP shunt malfunction. Dr Fukes, Neurosurgeon from Duke University asked to see her in one month for another MRI, and possibly surgery, which occurred on June 22, 2005. Due to the severity of her hydrocephalus in the lower ventricles and pressure on the spine, she required immediate neurosurgery a third time to move the VP shunt from the back of her head, and replace it at the top of her head.

Immediate results were apparent from her behavior, awareness, and personality. The second year started out without a hitch until she began having terrible migraines on a reoccurring basis, accompanied with violent vomiting episodes that would last anywhere from thirty minutes to three hours. After many visits with the doctors, in addition to MRIs and CT Scans, they suggested that she has what is called cyclic vomiting disease (CVS) and should take medication (Topomax). The medication should mitigate the migraines eliminating the vomiting spells.  Unfortunately we dealt with the reoccurring problem for the remainder of the year. We found out later that she required a shunt revision because she was growing rapidly, and the shunt was in affect getting to small for her body. She was once again rushed to Duke University for her fourth neurosurgery and first shunt revision. The surgery was a success and she returned home and continued physical and occupational therapy.   

Since her last revision, she has not had any reoccurring migraines or violent vomiting spells. She requires taking Topomax as a preventive measure which seems to work affectively. Additionally, she has been taking swim and equine therapy once a week, showing a remarkable improvement from one class to the next.

Our next priority of concern and action are her legs, and teaching her how to walk independently. Sia’s pediatric orthopedic (Dr. Greene) has prescribed AFO braces, assisting her to walk correctly. He feels that she may require surgery later as she reaches adolescence to correct her problem. Last week he placed casts on her legs to assist with stretching her leg muscles due to her mildly high tone.

Presently, Sia has cerebral palsy (CP) and is confined to a wheel chair. She is gradually learning to walk with the assistance of a walker, traversing from room to room in the house or walking short distances outside. Her left side is weaker than the right side as a result of the brain damage. The walking behavior could be compared to an adult stroke patient relearning to walk, dragging her left foot. She is able to communicate very well now, beginning six months ago. She is making complete sentences and carrying on conversations with anyone that wants to listen.

In closing, as you can see, my daughter has been through so much for a four year old little girl, and unfortunately; she still has a long way to go before she is where we would like her to be developmentally. Although, she is very determined and has a very strong will. Sia is our only child and truly our very little special princess. She means the world to us. As responsible and loving parents, we will do everything feasibly possible to ensure that she has a life filled with happiness and good health. We will always seek to improve her situation through medical, occupational, or physical therapies assisting in her progressive development. This is the story of our daughter Sia, and she is truly a miracle child. We hope that you can be part of her story, and that you are able to help us-help her to develop into a strong, confident, independent and healthy young lady. We look forward to hearing from you…  Very Respectfully

 Vincent Higgins (Sia’s Father)