Make Sure Brady Harlan Is Not Alone This Holiday Season
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Welcome to Brady's website. Brady was born 3-16-06 and diagnosed with VACTERLs. Please follow along is his story. Thank you all for your support & prayers as we continue this unknown journey.DON'T COUNT THE DAYS MAKE THE DAYS COUNT!The Mumm's - Mike, Rebecca, Brady and DayneMike and I have always wanted a family since we met. We have gone throuh two unfortunate miscarriages and then once again on August 9th of 2005 we are pregnant. Thus the journey of Little Baby Mumm begins. Many doctor visits to ensure a good pregnancy since I was already high risk for miscarriage, in the back of my mind I was so unsure and possibly new something would happen. Everything was okay until 20 weeks into the pregnancy I was showing signs of early labor and was diagnosed with polyhydramnios. Admitted several times for preterm labor received terbutaline, betamethasone and meg sulfate. Several ultrasounds were performed and the suspician of a tracheoesophageal fistula (TEF) and a 2 vessel cord was noted. Brady was born on March 16th at United Hospital by cesarean section at 32 weeks gestation. He was 2 lbs. 11 ozs. and 17 1/2 inches long. Very small for his age, but this was due to the TEF. Days would go by before Mike and I would soon find out everything going on with Brady. He was diagnosed with VACTERLS by Dr. Mary Ella Pierpont a week after birth. After 112 Days in the St. Paul Children's NICU we were finally HOME! V stands for vertebrae, which are the bones of the spinal column (Brady has fused vertebrae in his spine, and the most recent diagnosis Thoracic Insufficiency Syndrome (TIS) , his ribs are fused where they should alternate rib and muscle)A stands for an anal atresia (Brady had his imperforated anus surgically repaired in March 2007, we deal with an array of bowel issues)C stands for a variety of cardiac anomalies (Brady has 2 Superior Vena Cava’s, the right one is now obstructed by a permanent blood clot - thrombus , normal hearts only have one SVC) Now suffers from Lymphodema TE stands for trachea-esophageal fistula, (Brady’s trachea (wind pipe) and esophagus, were not connected to his stomach at birth, this was surgically repaired in March 2006) He has 75 % tracheamalacia affecting 2 cms of his trach.R stands for renal or kidney anomalies (Brady was born with only one right kidney) So far no major issues.L is often added to stand for limb anomalies (Brady’s right thumb is missing ligaments and lacks mobility - hypoplastic) S is for single umbilical artery, (Brady’s had a two cord vessel, instead of the normal three in uteral)His clinical findings also included a severe perineal hypospadias along with ambiguous genitalia, tracheomalacia, bronchomalacia, grade IV reflux (GERD), auditory neuropathy right ear only, lymphodema right side, delayed gastric emptying, severe sinutitus and a very large soft spot (still open at 30 months) . There is a wide range of manifestation of VATER association so that they exact incidence within the population is not exactly known. There will be many unknowns from here forward, but please follow along Brady's journey. Please take the time to sign the guestbook and provide your words of encouragement and prayers. 3-17-06 Tracheoesophageal fistula repair and colostomy with mucus fistula creation for imperforate anus. 3-21-06 Attempted cystoscopy and urethral catherterization. 4-10-06 Right thoractomy, ligation of mediastinal lymphatic leaks and partial parietal pleurectomy. Excision of perineal mass. 4-14-06 Left thoractomy, ligation of mediastinal lymphatic leaks and total parietal pluerectomy. 5-17-06 Direct laryngoscopy and bronchoscopy. 12-27-06 Posterior sagittal anorectoplasty - 1st Phase of imperforated anus. 12-28-06 Diagnosed with Auditory Neuropathy - right ear only. 1-30-07 Diagnosed with Hypoplasia of the right thumb. 3-21-07 2nd Phase of Imperforated Anus - Colostomy Take Down, Bronchoscopy and Vascular Doppler. 6-5-07 Diagnosed with mild Thoracic Insufficiency Syndrome (TIS). 11-7-07 Hypospadias repair - complete, Chordee repair, Scrotoplasty, Cystoscopy, Scope of his Esophagus and Biopsy, Bronchoscopy, Rectal Prolapse Repair. 7-23-08 Urethral Calibration, Cystoscopy, Bronchoscopy and Endoscopy. Ultrasound on Bladder and Kidneys. 11-14-08 2nd Hypospadias repair - complete Urethra, Scrotoplasty, Cystoscopy. 11-17-08 Emergency Supra Pubic Catheter placement. 12-14-09 Endoscopy and Bronchoscopy. 7-7-10 Started Bowel Management - Colorectal Center at Cincinnati Children's. 2-23-11 Revision of Ethmoid Sinus, Exploration Maxillary Sinus, Adenoids, Bronchoscopy. 10-25-12 Malone, Endoscopy, Calibration of stricture, Bronchoscopy, Cystoscopy. 1-25-13 Revision of Malone, Chait Placement, Endoscopy and Biopsy. 12-15-13 Chait replacement, Ultrasound of Kidney, Bronchoscopy 6-13-14 fracture of Humerus Bone Right Arm, cast for 8 weeks. 12-19-14 Chait replacement, Ultrasound of Kidney
Latest Journal Update
Thank you all for your kind messages over the last 24 hours. We arrived home quite late yesterday, the roads were terrible, many cars in the ditch etc. Clean out went well so we know the Chait was placed properly and working as it should. Brady did have a rough night with flu like symptoms, we are sure this was due to the anesthesia, he was throwing up and running a fever majority of of the night. He was low key all day and now seems to be back to his normal silly self this evening. I need to yet schedule is post op apps, hoping we really do not need to make the trip down and we can follow up locally. On a side note Brady has something wrong with his foot that we are in need of getting looked at, so maybe we can do both at the same time. We will see.
Again, wishing you all a Blessed Holiday!!
Again, wishing you all a Blessed Holiday!!