My Twin, Living With Patau Syndrome.
Pregnancy can be fun, crazy, exciting and sometimes scary. For a family in Michigan it has been all of those and more. The mother, Michelle, was happy to learn she was expecting, and was excited even more so and a little shocked to find out she was having, you guessed it, TWINS, a girl (Thlayla Mae) and a boy (Gabriel Morgan). The family lives two hours outside of Green Bay, and makes the drive for doctor’s appointments.
Michelle, scheduled for a appointments the second week of June, made the two hour drive to her doctors. The appointment, she remembers was a routine one, to receive a 4D ultrasound and to confirm for sure what they were having. The doctor, after confirming that Michelle was indeed having both a girl and a boy, continued to perform the ultrasound, having spotted something wrong.
The doctor explained that it appeared that Michelle’s baby girl's brain was fused down the middle, instead of being separated like normal, and that he suspects she has a cleft lip. This horrible news was only compounded by the heart breaking news that the baby also has a chromosomal disorder called Patau Syndrome. The doctor offered a shot
Patau Syndrome is the least common and most severe of the viable autosomal trisomies, with average survival fewer than 3 days. Patau syndrome can also occur when part of chromosome 13 becomes attached to another chromosome (translocated) before or at conception in a Robertsonian translocation. Affected people have two copies of chromosome 13, plus extra material from chromosome 13 attached to another chromosome. With a translocation, the person has a partial trisomy for chromosome 13 and often the physical signs of the syndrome differ from the typical Patau syndrome. Most cases of Patau syndrome are not inherited, but occur as random events during the formation of reproductive cells.
A week after the ultrasound, Michelle received a call, confirming Patau Syndrome. The family was ded, survival rate among those born with Patau Syndrome are dim. Average survival period for newborns suffering from Patau syndrome is 2.5 days. Less than 20% patients live more than a year. Reports of adults with Patau syndrome are rare. (*a) .
Michelle says that after she explained to her two boys Mathew and Jakob about the twins, her oldest Mathew “hugged my belly the other day and said "I’m going to miss you layla, you’re my only baby sister" Speechless Michelle says all shoe could do was hug her son. Michelle, scheduled for a caesarean section November 30th, says she is grateful for that the recovery time also provides extra closeness to her in Thlayla Mae’s blessed time here on earth.
After bath care for a baby such as Thlayla Mae, includes morphine as its is vary painful for the baby just to be awake. Thlayla Mae according to her mother “may need a feeding tube in her nose or mouth due a possible cleft lip, and if they cant find a clear path for the tube we will have to be transferred to another hospital where they can surgically put one through her little belly. as soon as shes born they will have her on palliative medication (cancer meds) ”
The family is facing tough times after hospital bills, bills along with raising two growing boys and missed work. For those wishing to make donations may send them to “C/O KERRI LILES GENERAL DELIVERY MANVEL, TEXAS 77578” until November 13. A fund has been set up at HERE.
* Some/all names have been changed
© 2012 Support Life. All Rights Reserved. Christopher A. Merritt
Michelle, scheduled for a appointments the second week of June, made the two hour drive to her doctors. The appointment, she remembers was a routine one, to receive a 4D ultrasound and to confirm for sure what they were having. The doctor, after confirming that Michelle was indeed having both a girl and a boy, continued to perform the ultrasound, having spotted something wrong.
The doctor explained that it appeared that Michelle’s baby girl's brain was fused down the middle, instead of being separated like normal, and that he suspects she has a cleft lip. This horrible news was only compounded by the heart breaking news that the baby also has a chromosomal disorder called Patau Syndrome. The doctor offered a shot
Patau Syndrome is the least common and most severe of the viable autosomal trisomies, with average survival fewer than 3 days. Patau syndrome can also occur when part of chromosome 13 becomes attached to another chromosome (translocated) before or at conception in a Robertsonian translocation. Affected people have two copies of chromosome 13, plus extra material from chromosome 13 attached to another chromosome. With a translocation, the person has a partial trisomy for chromosome 13 and often the physical signs of the syndrome differ from the typical Patau syndrome. Most cases of Patau syndrome are not inherited, but occur as random events during the formation of reproductive cells.
A week after the ultrasound, Michelle received a call, confirming Patau Syndrome. The family was ded, survival rate among those born with Patau Syndrome are dim. Average survival period for newborns suffering from Patau syndrome is 2.5 days. Less than 20% patients live more than a year. Reports of adults with Patau syndrome are rare. (*a) .
Michelle says that after she explained to her two boys Mathew and Jakob about the twins, her oldest Mathew “hugged my belly the other day and said "I’m going to miss you layla, you’re my only baby sister" Speechless Michelle says all shoe could do was hug her son. Michelle, scheduled for a caesarean section November 30th, says she is grateful for that the recovery time also provides extra closeness to her in Thlayla Mae’s blessed time here on earth.
After bath care for a baby such as Thlayla Mae, includes morphine as its is vary painful for the baby just to be awake. Thlayla Mae according to her mother “may need a feeding tube in her nose or mouth due a possible cleft lip, and if they cant find a clear path for the tube we will have to be transferred to another hospital where they can surgically put one through her little belly. as soon as shes born they will have her on palliative medication (cancer meds) ”
The family is facing tough times after hospital bills, bills along with raising two growing boys and missed work. For those wishing to make donations may send them to “C/O KERRI LILES GENERAL DELIVERY MANVEL, TEXAS 77578” until November 13. A fund has been set up at HERE.
* Some/all names have been changed
© 2012 Support Life. All Rights Reserved. Christopher A. Merritt