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The Beginning - Meghan's Miracles

“Children are the most wholesome of the human race, for they are the freshest from the hands of God”  C.S. Mott

Meghan Marie Salter came into the world on October 16, 2002.  She was born healthy with no apparent health problems.  For the first three weeks, she ate, grew, slept, and did everything a healthy, happy baby would do.  Her health started to change during the second week of November…

After a bout of severe diarrhea, Meghan started to lose weight.  In the weeks to follow, the she lost interest in eating, she became very colicky, and made many trips to the pediatrician.  At that time, the pediatrician was mainly concerned with her lack of weight gain, because Meghan’s weight had slipped from 50 percentile at birth to 10 percentile by mid-December.   We decided to introduce formula into her daily feeding schedule to assist with weight gain. 

Meghan’s weight fluctuated for the remainder of December, but did not increase at the rate that the pediatricians hoped for.  In addition, Meghan became increasingly weak—eventually losing complete mobility of her legs and arms.  By this time, Ellen and I were very concerned about the lack of testing and concern from Meghan’s pediatrician.   After the Christmas holiday, our medical insurance changed, so we decided to change her pediatrician to one that we were previously very happy with.

In early January, Meghan was unusually fussy and weak, so we contacted the new pediatrician to inform him of the entire situation.  Upon hearing of Meghan’s weakness, he immediately sent us to the Beaumont emergency to have her evaluated.  The emergency department quickly admitted Meghan for extensive testing.  The emergency doctors prepared us for what was to follow in the coming days.  They informed us that Meghan’s weakness stemmed from one of four sources: brain, spine, nerves or muscles.  The following day many tests were performed: blood tests, urine tests, x-rays, a cat scan, and many other tests.  All preliminary testing came back normal.  The CAT scan ruled out problems with the brain.

At the end of the first day at Beaumont, a pediatric neurologist thoroughly examined Meghan.  Her symptoms and a thorough examine led him to believe that Meghan had Spinal Muscular Atrophy (SMA).  The only way to determine if she had SMA was through genetic testing.  The neurology team also did an EMG to test the muscle and nerve conductivity.  The EMG proved that Meghan’s condition was not a muscular problem, but a nerve condition of some sort.   The neurologist seemed convinced that Meghan had SMA.  The SMA test results took a grueling two weeks to come back, but after thousands of prayers, Meghan’s first miracle occurred—the SMA test results came back negative.  We were overjoyed and thanked God for His goodness!

The neurologist then ordered further DNA tests to determine the cause of Meghan’s condition.  The results would take another two weeks.  During these weeks, Meghan gave us new hope—she started to “twitch” her legs and slightly move her arms.  In addition, the new pediatrician changed her baby formula to “Nutramigen,” which is a formula used for colicky babies.  Meghan responded positively to the Nutramigen and became less colicky—she seemed calmer and was able to sleep for longer periods of time. 

In late January, nervously, we returned to the neurologist to learn the results of the additional genetic tests.  Unfortunately, the results were not available during our appointment with the neurologists.  During the exam, the neurologist was surprised to see Meghan moving her arms and “twitching” her legs—even though the movements were slight.  We also brought him a video of her first bath (from her first week of life).  The video was very enlightening to the neurologist because it showed Meghan with full arm and leg movements.  He was so shocked that he changed his whole diagnosis.  This proved to be Meghan’s second miracle!

He explained that a demyelinating neuropathy could only be caused by one of two things:  a genetic abnormality in the DNA that a child is born with or an inflammatory condition brought about by a virus or bacteria.  He said that with any genetic demyelinating neuropathy, the patient would not get better, but that the nerve condition would continue to worsen with time.  He concluded that since Meghan had moved at birth, then became nearly paralyzed, only to start moving again, she must have had an inflammatory condition called Guillian Barre’ Syndrome (GBS).   If his new diagnosis was correct, Meghan would continue to get stronger, but full recovery would take 6-18 months.

Our family was quite relieved and thanked God each day for Meghan.  She continued to achieve new milestones like thrusting her legs and lifting her arms to her face (she loves to suck on her hand!)   Then, one day in mid-February, after her nightly bath (which we used for Meghan’s physical therapy) our worst nightmare happened…Meghan suddenly and inexplicably stopped breathing.  We were panic stricken.  Neither Ellen nor I knew infant CPR—a skill that we had wanted to learn since our oldest child, Lauren, was born.  The 911 operator taught me infant CPR over the phone.  Thankfully, a neighbor of ours is a nurse and she took over the CPR duties until the ambulance arrived 2.5 minutes later.  Meghan was taken to the hospital, intubated, and flown via helicopter to Mott’s Children Hospital at the University of Michigan Medical Center. 

Meghan was quickly stabilized.   The neurology team determined the apnea event to “seizure activity” even though she had no history of seizures.  She was immediately started on Phenobarbital to control the seizures.  They would keep her in ICU for six days until her Phenobarbital blood level rose to a level that they thought would control the seizures. 

While in the ICU, they began a whole new range of their own tests.  They were not convinced Meghan had GBS because it is extremely rare in babies.  Their research only found 5 other cases of GBS in recorded history!  So, they tested and tested and tested.  These tests were done in cooperation with the Beaumont neurologist—to avoid duplicating tests.  Some of the new tests were to determine if there were chromosomal deficiencies, enzyme deficiencies, amino acid deficiencies, West Nile Virus, auto-immune abnormalities, and various other rare disorders.  All tests continued to come back negative and U of M now agrees that Meghan has GBS like symptoms.

Meghan was released from U of M with an “apnea/heart monitor” so we would know if she stopped breathing at any time.  The first few days and nights at home were nerve racking to say the least.  Many times, Meghan looked as though she was close to having a “seizure” but never had a spell.  Then, six days after arriving home—and the day I returned to work—she stopped breathing during what looked like a seizure.   Ellen was at home with all four of our children when it happened, but remained calm while waiting for EMS to arrive.  Again Meghan was taken to the local emergency room, intubated and flown via helicopter to U of M Mott’s Children Hospital.  She spent one day in ICU and six additional days on a general care floor.  In the interim, the neurologists continued to increase her Phenobarbital level to curb the “seizures.”

Still U of M could not explain the “seizures.”  We were sent home with Meghan—nervous about the unknown and what the future held for Meghan and our family.  We were home only 30 minutes when Meghan had another “seizure.”  The neurologist advised us to give an extra dose of Phenobarbital, but there was no need to return to the hospital.  The following days brought many mini seizures.   Then, on day seven, she stopped breathing, once again and Meghan was flown to U of M for the third time.

U of M neurologists started Meghan on two new anti-seizure medicines in conjunction with the Phenobarbital.  During the next few days, Meghan began to become very lethargic, stopped eating, and had longer, more intense “seizures.”  Ellen and I demanded that the neurology team to conduct a test that they failed to do the first time Meghan was admitted several weeks earlier—a 24 hour video EEG test.  This test would determine the nature of the seizures, when the seizures start/end and how much of the brain is affected.  After the test was completed, it was determined that the apnea events were not seizures at all.  Meghan’s Phenobarbital blood levels increased to nearly double the maximum level for her size/weight.  Because of that, Meghan was weak, needed tube feedings, and constant monitoring.  To make matters worse, anyone on Phenobarbital needs to be weaned off for fear that stopping the medicine suddenly could cause seizures.

The Pulmonary doctors did a Bronchioscopy to determine the nature of Meghan’s apnea spells.  They determined that she has a condition called “Laringo Malecia” with which the airway collapses suddenly—rendering her unable to breath.  The only way to correct this was to do a tracheotomy to provide Meghan with a way to breathe.   The tracheotomy was performed earlier this week.  As always, Meghan has battled through the trauma.  She has been on and off of the respirator, but continues to fight.  The doctors tell us that she will likely need the vent only until she regains strength—possibly by the end of the year—which will be another miracle.

Through this entire episode, Meghan has been an inspiration to all of us.  She is a fighter and brings a new sense of hope daily.  She has proven our Miracle Child over and over again.  We get a smile on our face knowing that when she grows up, she will be the only one of our family to not remember the 2003 miracles and the trauma she had to endure! 

Meghan has inspired many people to a deeper relationship with God and brought many people closer to each other.  She has helped those around her to refocus their lives on what is truly important—God, family and loving your fellow neighbor.  Ellen and I are so very grateful for all of the prayers, meals, assistance with the other kids, time spent comforting us, financial help, cards, gifts, phone calls, and love given during the past several months.  We pray daily for each and every one of you and will never forget your love and generosity.

We love Meghan so much and pray that God continues to bring new miracles to our family each day.   I will update this web page as new miracles occur.  

Father, I adore you.  I give my life to you.  May I be the person You want me to be and Your Will be done in my life today. Thank you for the gifts You gave to Father Solanus.  If it be Your Will, glorify him on earth so that others may carry on his love for the poor, lonely and suffering in our world.

So that others will joyfully accept Your Divine Plan, I ask you to hear this prayer:  that Meghan is restored to complete health, through Jesus Christ our Lord.  Amen.

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