Naiyah

Naiyah’s Story

“A Blessing to Experience through Our Journey as Mother & Daughter”

Naiyah, Trisomy 13, Montgomery Village, MD, 9/1/2009

Update
nayaih 3Remembering Informing the Doctors to Change the Mindset of Incompatible with Life or Failure to Thrive. There are Long Term Survivors giving them the Resources to Listen to the Life Stories & Connect with Living With Trisomy 13 Archive, SOFT & Noah’s Neverending Rainbow to Witness the Shared Stories & Medical Professionals that Believe in Medical Intervention….. My Naiyah is a Miracle Baby because She Survived Life Threatening Events thru Her Health with the Will to Survive & Fighting Spirit which is evident. Living & Thriving!!!! Myself Staying on the Battlefield to expect the Extraordinary, Medical Intervention to give Medical Supportive Care, Advocate & Educate the Medical Professionals in the Doctor’s Offices & Teaching Hospitals (6 Different Locations in the Washington Metropolitan Area MD/DC/VA & Doctors/Specialists Offices). Look at My Child with Eyes Awakened to Realize there is Hope not Hopelessness based on the the Medical Textbooks. See Clearly that She is More than just a Patient to Study & Analyze for Research. Maintain a Humane Approach with Ethics, to give Her Respect, Integrity as a Well Loved Child that surpassed their Expectations. My Child Surviving, Reaching Milestones & All the Awe with Her as well as Adoring Her in the Medical Community. Smile.
Written March 2015
naiyah 2
(Picture Naiyah’s 1st Bday in Chair Opening Presents/Naiyah Easter Sunday Morning Mom Holding)
Naiyah Health Crisis from Infancy to Toddler Age 3 yrs. 2 mons. 9 days old
naiyah 1My Preciously Adorable Naiyah with a Super Expressive Personality, Playful, Harmonizing & a Chatty Patty vocalizing Always… Music to My Ears…..Full Trisomy 13 Pictured on Her 3rd Bday Hello Kitty Princess Dress. Ms. Hollywood!!!! Rocking Her Sunglasses!!!
 Medical Necessity G Peg Surgery to replace OG Feeding (3 Months)
Naiyah’s Craniofacial Surgery for Cleft Lip & Palate (Scheduled 3 weeks later April 2010) was postponed indefinitely.Due to Complications from a Medical Error IV from Skin Cells Staph MSSA introduced in Bloodstream requiring Infectious Disease Team to Treat with PIC Line with 2 Antibiotics. Nosocomial in Hospital Environment was not prevented even with 4 Shots of Synagis caught RSV In Patient. Critical Condition Coded Twice with Myself intervening & Code Team for All Medical Staff to due Full Code. Naiyah Survived Staph could attack Heart so Treatment required. Hypernatremia April 2010 because GI informed Parents only give Water in Food. Mother concerned from Birth No Water given extra for Hydration. Severe Hypernatremia following Dr’s Orders from GI from Parents & LPN Nursing at Home. Several Bolouses given to Re Hydrate correcting Dehydration at SGAH. realizing later Normal Size Heart became Enlarged by Boluses. Seizure med. given which looked like Clinical Seizures as well as Abnormal EEG due to Malformation of the Brain. Titrated Infant Dose given to treat Seizures caused Respiratory & Heart Failure May 2009.
Captopril caused Kidney Failure Twice given with Digoxin when Dehydrated. Parents wanted Child weaned from Captopril & Digoxin because 5 Good Echoes at Healthy Baseline. Pediatrician preferred to continue keep hydrated. Naiyah was given Pre Digested Formula Elecare for Infant which gave Growth Spurt from latter Feb.2009 thru to April 2008. GI CRNP & Nutritionist advised approx. 2 Cups of Elecare mixed with Water via G Peg. November 2011 thru to January 2012 chronic projectile vomiting with Mother taking to Specialists & ER several times to resolve & cease chronic vomiting. Zofran given in small doses to manage Chronic Vomiting. Mother kept reminding Pediatrician & GI that even the slightest vomiting or large stool causes Dehydration which can cause Kidney Failure per advised by Nephrologist to Prevent. Several visits to PCP/Pediatrician, Radiology Upper GI & Nuclear Medicine Ultrasound of Kidneys, Spleen & Abdomen. No Blood Tests ordered Out Patient. ER Visits blood drawn no findings of reason for Chronic Vomiting. April 2012 Diagnosed Irreversible Kidney Damage due to Captopril. Naiyah survived Kidney Failure for 7 months. Mother sole caregiver wanted medical intervention such as Dialysis or Kidney Transplant. Docs informed Child will not Survive Either Dialysis or Kidney Transplant. Several visits to All Specialists continued Nephrologist, Pediatrician, Pulmonologist CRNP & other Team of Doctors. Naiyah Survived thru to November 10, 2012 being In Patient at Hospital. for almost a Month & half. Kidney Failure worsened to 35%, 20% to No Kidney Function even in Full Code Status. Kidney Failure Interconnected Cascade Effect caused Heart Failure & Respiratory Failure. Naiyah Age 3 Yrs. 2 months 9 days old Survived Full Trisomy 13. Parents & Family Heart broken & changed their lives because wanted Her to continue to Survive.
naiyah 4(Picture Naiyah in the Crib)

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NAIYAH-EASTER-2010

Honouring Naiyah’s Birthday (September 1, 2009) 

Special Mass Germantown, MD 20874

My Daily Prayer with My Darling Naiyah….Thanking God for Blessing Us with every Precious Moment, every Blessed Day to Share with My Miracle Baby Naiyah….Naiyah and I…as her Mother have a Special Bond that We Share Together…

NAIYAH-MY-LIVING-DOLL 2nd BirthdayA Blessing to experience… My Heavenly Father give Me Strength…….Naiyah My Precious Child is in Heaven today. I Love You with All My Heart! Mommie wanted You to stay here with Her Forever…. Naiyah your Beautiful Spirit gave Me so Much Love & Joy. Every Day you made Precious Celebration of Life every moment with your Over Joyed Happiness, Smiles, Abundant Love, and Playfulness. You touched so many lives showing you were truly a Miracle Baby…. God blessed Us with countless Miracles by Your recovery from life threatening issues…You touched lives with Your Beautiful Spirit & Angelic Grace noticeable to everyone you met from family, church, pastoral care, community, doctor’s offices, hospitals etc. You have Always been My Angel Here on Earth surrounded by Angels in a Divine Channel to Heaven. Our Beloved Precious Naiyah…. We will Always Love You….We will Always Miss you Here on Earth. Now being an Angel in Heaven…. We Sincerely Hope…. When We are Called Home to be Worthy to Reunite with Naiyah and All of Our Loved Family Members in Heaven surrounding Her…. in Our Heavenly Father’s Kingdom of Heaven for all Eternity…..
People were also bringing babies to Jesus for him to place his hands on them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.” Luke 18:15-16

For Those Attending or Those who will be there in Spirit….. Any Blessings, Fond Memories of Naiyah, Prayers or Words of Comfort would be so greatly appreciated….

Pictures – Naiyah’s 2nd Bday with Her 1st Dolly in Her Party Dress (since an Infant). 1st Dress on Her Bday before Wardrobe Change….to Formal Wear… My Precious Living Doll Loved to Dress Up…

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Naiyah and I…as her Mother have a Special Bond that we Share Together…A Blessing to experience… Our Love for Us as Mother & Daughter Always….shared with hugs, cuddles, playful moments, singing, talking with each other & smothering with kisses. She has great sense of humour making Me laugh so hard & Her laughing responding to My fun filled moments… Naiyah is very Expressive Vocal (Chatty Patty), Facial Expressions & Singing, Smiling & Laughing all the Time, Flamboyant Personality, Angelic Presence Always Surrounds Her & resonated in Her…. Nurturing, comforting, consoling, watching your favorite movies/cartoons, playing music for both of us so musically inclined my Angel. Naiyah Always loving, affectionate, sweet, happy, very observant and intelligent child. She has a strong attention span, deliberate focus, extremely aware of people, things, reacts to sound, understands every thing verbally or visually demonstrated, can mimic and repeat learned behavior. Naiyah’s Precious Milestones…. A Blessing to Experience through Our Journey as Mother & Daughter…. Doctor’s were Amazed about certain Milestones & Health Challenges Naiyah Survived by Miracles…. Naiyah Loves Life…. accomplishing growth & developmental goals that were not expected… God Granted Precious Naiyah so many milestones…. Naiyah Always  a very Precious and very much Loved child. She is full of amazing radiance, beaming abundant sunshine smile of extraordinary brilliance and rejoicing to the highest heights. At the very sound and sight of her loved ones, Naiyah illuminates the room with her dazzling smile, waved her hands in gracious rejoicing and kicks her feet in sweet rhythmic Dance of Joy.Her super-expressive excellent disposition quickly endears Our Precious Naiyah to all who met her. Naiyah Always such a wonderful and wondrous child that she rendered loving her a Celebration of Life & Joy. My Miracle Baby…No sooner she recovers from any episode health issues cast at her or any procedure the hospital imposes on her than she bounces back to her sweet disposition, so dainty, delicate and her signature radiant smile. Beautiful Spirit gives Me so Much Love & Joy. Every Day you make Precious Celebration of Life every moment with your overjoyed happiness, smiles, playfulness. You touch so many lives showing you are truly a Miracle Baby with everyone you met from church, pastoral care, community, doctor’s offices, hospitals etc. You have Always been My Angel Here on Earth surrounded by Angels in a divine channel to Heaven. Everyone knew She was a Miracle Baby b/c I reminded them most children w/out health issues may not survive what she has been through which shows God still grants Miracles w/surviving every major crisis. They realized I was right admitted My Care for Her, Her Fighting Spirit & God w/Miracles allowed Her to Survive. I Always have seen My Child as a Blessing & Prayed for All the Miracles God Blessed Us with Our Lives. My Love for My Child & Her Love for Me keeps Her going. Strong Faith & Prayer…. I pray that the medical profession in particular and all humanity in general will value all lives and focus on giving each person a chance while leaving the span of life in the domain of God’s Hands.

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NAIYAH-NICU-ISOLETNaiyah’s Birth Shared with Living With Trisomy 13 Archive September 2009. Just being informed Full Trisomy 13 considered Incompatible with Life & Failure to Thrive. Shocked & Heart broken because given Hopelessnes based on the Medical Textbooks. Searching for Answers about Trisomy 13 Blessed Beyonds Words to Find Online Suport Group Living With Trisomy 13 Sharing Stories & Pics of Wonderful Families with their Precious Children Enjoying Life to the Fullest!!!!

Mother never knew about condition with my pregnancy. Did not find out ’til day of birth that some thing was wrong until, cleft lip and palate when born. Chromosonal tests confirmed the condition, after birth. When I had no idea about the health of baby never shown thru the sono. b/c excuses were made about the position of the baby or b/c I had a larger abdomen due to my weight. How did they not see my babies head, brain or face/cleft? I did know the gender of my baby ’til the 7th mon. This makes no sense to me at all! I am having a conference w/the dr’s, perinatologists that missed all the problems and issues. I was considered high risk b/c of my age 38 yrs.old; 1st child and chance of adult onset or gestational issues such as diabetes and preclampsia.

I had an emergency c-section (35 wks. pregnant) on Sept. 1, 2009 b/c of beginning stages of preclampsia high blood pressure. The Labor & Delivery gave me IV fluids w/blood pressure medicine. The babies heart rate started dropping. The dr. kept me for 24 hrs. thinking I had to be on bed rest for 30 days in the hospital. A couple hrs. later he told me that an emergency c-section was necessary b/c I would deteroiate and the baby would not be in a good environment in my condition. This could deprive the baby of adequate oxygen, nutrition and blood flow. I was very apprehensive about the surgery and was hysterically crying. They prepped me for surgery that evening. The baby was born at half past 8 pm. She was having some difficulty breathing. She has been in NICU all this time w/a condition that does not allow her to remember to breathe. This condition cannot be corrected medically or any other way. I am devastated…… She has no guarantee chance of life per dr’s. I need God to intervene and make her a miracle baby that is one of the survivors. All of the rest of her body is fully formed and functioning, except this issue. I was discharged w/out my baby. This was very difficult for me to leave my baby at the hospital. My body aches and yearns to be with my baby at all times…. I cried all the way home.

A day later, I was re admitted for respiratory failure, possible heart failure and high blood pressure. I ended up having to have blood transfusion losing too much blood from the c-section complications. The baby is in critical condition and has chronic breathing problems. Why did this happen to me and my baby?????? When I went to the dr’s they never told me that there was a problem w/the baby. They should have seen it on the Level 2 sono or gave me a 3D/or offered a more detailed sono thru the hospital. A cerebullum has a problem. The L & D sonographer at the hospital saw my baby’s problem rt. away (Aug.31st L & D)! Why did the sono personnel not see it during my pre natal visits for high risk pregnancy?

I had to have the baby baptized, anointed, healing service and name blessing ceremony. The baby has been prayed for by my family, pastors, chaplains, nun, churches and every possible person aware of the situation. I was discharged 5 days later. Pray for a miracle for my baby Naiyah.

The hospital kept trying to convince me to take the baby home w/a little medical support such as a lay person’s machine, etc. excluding hospital equipment w/a hospice nurse. Medical Personnel told me my time once the baby is taken home…..can be in a matter of mins. or a few hrs? I decided against that to give my daughter a chance at survival. The only option was to transfer the baby to a long term hospital. She had several cpr/bagged method to bring her back w/in 1 to 2 min. ( 6 times; before ventillator for 3 to 4 days /baby was breathing better than the machine). Previous response from baby or respiration drop corrected by rubbing the back which stimulated breathing.She had to have a breathing tube in her mouth thru to lungs for several days w/a ventillator. Now, she is on regular oxygen which is helping minimally after, breathing tube was taken out. I have not been able to hold her or care for her as a mother b/c all the tubing and machines kept on her. I cannot feed her my breast milk b/c the hospitalist/dr. gave me medicines that cannot be present in my breast milk to be fed thru a feeding tube. I was only able to hold her 3 different times.

Feeding tube thru to the stomach gives my baby nourishment w/premie formula. The baby is rapidly getting cc amt. of food increased by 3 cc per feeding( 30-32cc). In order to remove the IV fluids for liquid nutrition. Baby was not tolerating increase and spitting up or vomitting up 10 to 13 cc of feeding tube thru the syringe. Residual fed back to her. They slowed the feedings to the pump spread out over an hr. and decreased to 30 mins. Baby still spitting up, but not as often. She has improved to date 09/19-09/20/09 less frequent feeding problems and working w/close to minimal breathing crisis or drop in respiration. Canula hi flow 21% able to hold the baby the entire wk.this past wk. The baby is being transferred to a long term medical facility, before transition to home early this wk. I will never forget the precious moment of her laying in the palms of my hands….as I was talking to her…. Naiyah raised up both her arms and embraced my face…..She has been smiling for last few days which also gives me hope. She is trying to be active as much as she can as a baby. I am having transportation problems b/c I cannot drive my car. I do not have a definite way of transportation. Any day I am not with her is crushing to me. I can only keep in touch w/the dr’s or nurses by phone; 1 day at a certain time; 2 days in a row is too long considering my predicament.

I know that my health has really gotten worse than I ever had been b/c of the stress worry, sleep deprivation not wanting to eat. If some thing happens to her fatal like the dr’s suspect. My body may not be able to take the stress of the loss and I may not survive myself. Pray for both of us. The reason for this belief is a clear indication that I have always been relatively healthy, but after every thing related to the child birth and my babies condition; I am not able to recover b/c still chance of a heart failure and more diagnostic tests to make sure no clots are near my lungs causing shortness of breathe.

I would love to find out the medical interventions even if “extraordinary” to give my baby a chance at life w/longevity. Please send info. pertaining to your life experiences and miracles. What treatment methods are best? What hospitals are best? Any suggestions to help my darling beloved baby. Let me know the outcome of your child. I live in Montgomery Village, MD. Any support groups in my area? Keep my baby in prayer for a supernatural healing. I am usually at the Hospital.