“We couldn’t be more proud!”
Maggi Blair, Mosaic Trisomy 9, 4/18/2005, Atlanta, GA
April 18, 2005 Margaret Michelle Rosalee Blair was born. 5lbs 14.4oz and 19″ long. At birth, the doctors noticed a deformity with Maggi’s head and right eye, so she was immediately taken and admitted to the Neonatal Intensive Care Unit at Southern Regional Women’s Center. We were able to bring her home on May 6, 2005 with a strict medication schedule and sever feeding issues. Upon the advice of the discharge doctor at Southern Regional, we made an appointment with Dr. Fernando Burstein, a plastic surgeon at Children’s Healthcare of Atlanta. He diagnosed Maggi with Craniosynostosis.
August 18, 2005 Craniotomy Surgery to correct skull deformity. Procedure performed by Dr. Fernando Burstein, plastic surgeon, and Dr. Kevin Stevenson, neurosurgeon.
June 14, 2005 Maggi stopped breathing due to an overdose of Reglan. Patrick started CPR while the ambulance was on the way. She was admitted to Scottish Rite Hospital facing near death from Reglan Medication.
What Happened? Maggi was put on Reglan when she was admitted into NICU at Southern Regional Hospital. The doctors say they put her on Reglan because she had feeding issues and the possibility of reflux. When she was released from the hospital, she remained on the reglan. During one of the refills, the pharmacist made a mistake. Her dosage was supposed to be .10 mg ~ 1 ml. The pharmacist mixed it as 1 mg ~ 1 ml. When we got it, the label still read the same, but the color and consistency of the reglan was much different. We contacted the pharmacist, but he insisted that he mixed it correctly. We told her pediatrician, but she couldn’t tell us anything. We had been giving Maggi the reglan as directed. Every time she took it, she choked on it. We finally took her and the bottle of reglan to the pediatrician. She contacted the pharmacy. She helped us find out about the mistake, so for almost 4 weeks, Maggi was taking 10 times the dosage.
February 13, 2006 Surgery to release Tethered Spinal Cord. Procedure performed by Dr. Kevin Stevenson.
February 19, 2006 Maggi in Scottish Rite Hospital, only 24 hours away from dying of Rotavirus that she contracted while having the spinal cord surgery on the 13th. She was there over one week and pulled through.
May 2006 Maggi’s geneticist called to give us Maggi’s diagnosis of Trisomy 9 Mosaic Syndrome.
Maggi’s Trisomy 9 Features – Right Coronal Synostosis, Broadened Forehead, Bilateral Ptosis (right greater than left) , Epicanthal Folds, Fine Horizontal Nystagmus w/ intermittent right Exotropia, Low-Set Posteriorly Rotated Ears, Bulbous Appearance of Chin/Nose, Down-Slanted Outer Canthi, Down-Slanted Corners of the Mouth, and Thin Vermilion Border. Reflux, Filar Lipoma, Low-Lying Conus, Progressive Scoliosis @ 40 degrees, Bilateral Preauricular Pits, Proximal Implantation of Thumb and Hammertoe Appearance of the Great Toes, Medial Deviation of Right Great Toe, Additional Nasolacrimal Fistula, Left Inner Canthus… (genetics report, 6/2/06)
Other Medical Issues
Apnea – More specifically, Central Apnea.
Seizures – Due to Reglan overdose. Luckily, Maggi doesn’t have seizures on a regular basis, but if she gets too hot, she will have one.
Low Muscle Tone – A child is said to have low muscle tone – hypotonia – if her muscles are on the loose, floppy side.
December 30, 2006 Maggi was admitted to Scottish Rite Hospital for 9 days with a life-threatening upper respiratory infection.
August 6, 2007 Maggi admitted to Scottish Rite Hospital for 6 days, surgery to remove severe infection in her upper right jaw around tooth. Tubes were placed at the same time.
July 21, 2008 Maggi has surgery to insert a Vertical Expandable Prosthetic Titanium Rib (VEPTR rod) to expand rib cage, and begin the straightening process of the scoliosis. Surgery was successful, correcting her 85 degree scoliosis curve to 50 degrees!
December 11, 2008 Maggi’s VEPTR2 Rod was lengthened by her surgeon, Dr. Devito, at Scottish Rite Hospital. This procedure took Maggi back to a 55 degree thoracic curve in her scoliosis. This is an ideal degree for Maggi to be at so that she can maintain proper lung function. Maggi went home only a few hours after the procedure was completed.
March 12, 2009 Maggi was under sedation for over one hour to have her second set of tubes placed in her ears and an Auditory Brainstem Response (ABR) test (see information below). The doctors said that Maggi has moderate hearing loss in her right ear, but her left ear showed normal. They want to test her again down the road to see if the hearing in the right ear improves with the new tubes.
April 8, 2009 Maggi’s rod lengthening surgery went very well! Dr.Devito told us that the hooks at the bottom of the rod were beginning to wear, so he replaced them with screws, lowered the rod, and lengthened it. He did not tell us any specific curvature that her scoliosis is at now, but he was confident that he has helped Maggi feel better with her back.
October 21, 2009 VEPTR 2 Growth Rod lengthening surgery.
April 30, 2010 VEPTR 2 Growth Rod lengthening surgery.
September 1, 2010 Surgery performed to replace the VEPTR 2 Growth Rod with a longer one. Screws replaced at the bottom of the rod, and a bone graft was added to further stabilize the screws.
September 4-19, 2010 Maggi caught a near fatal chest cold. The cough was persistent and added much pain to her back while trying to heal from surgery on 9/1/10, the intense pressure caused her incision to open slightly and bleed. The light in her eyes left us, and she was close to dying. It took 15 meds/day and respiratory therapy to move the infection out of her lungs and into her airway. The only way we could get her to cough hard enough to clear her airway was to have the neighbor’s dog come over and bark at her. She tried barking back, and the sweet girl began clearing herself! What a miracle!
November 18, 2010 Dental surgery & third set of ear tubes.
December 26, 2010 – January 18, 2011 Maggi suffered from a chest/sinus infection. This nearly took her life on New Year’s Eve. Intense respiratory treatment was done at home to assist in Maggi’s long fight and recovery.
February 16, 2011 – April 17, 2011 Sinus and respiratory issues again reared their ugly heads, thought to be cause by a pollen allergy. Numerous visits to specialists with no relief from respiratory treatments.
April 17, 2011 – April 21, 2011 Maggi was admitted to Scottish Rite Hospital after waking up with paralysis on the left side of her face. She has not urinated since April 16, and had quit breathing two nights prior, refusing to eat. She was diagnosed with Bell’s Palsy, and pollen was not the causing factor of her last two months of health issues, and possibly other issues prior to that… at this time, we cannot reveal the cause, but it is being dealt with.
June 10, 2011 – Maggi had yet another VEPTR II lengthening. Everything went well, and Maggi came home the same day. We were a little worried for a few days because the incision site looked really rough and purple! After a visit back to Dr. Devito’s office, he told us that the purple roughness was a new kind of skin glue he had used over the incision. So our minds were set at ease. Maggi also ran a fever for about 3 1/2 weeks. We were worried about that, too, but were told that it was “just a bug”… but we monitored her temperature almost hourly to make sure it never got too high. Not fun to do, but necessary. She was given meds when needed to keep her fever from going too high, and luckily it never got over 101.
More information at http://www.maggiblair.com/