Luke's birth story

Luke was born 37.5 weeks gestation and considered term on Nov. 21st, 2005. Immediately after birth Luke went into hyper insulin shock and went into respiratory distress therefore was put on the vent in the PICU at Children's downtown.


I (the mom) was gestational diabetic and not treated properly for this during my pregnancy. Hence, why Luke's glucose levels were all over the map. They had to treat him to stabilize his glucose levels as well as keep him vented for 2.5weeks in the PICU.

Consequently, there were 2 failed extubation attempts and then after 2.5 weeks....extubation successful and Luke was breathing on room air. During the 2.5week PICU intubation period, Luke was diagnosed with severe hypotonia throughout his entire body and poor suck/swallow. He also was born with severe edema and had contractures in his hands and feet.

He was also diagnosed with Larynomalacia by the ENT and was ordered to sleep on his side and we were ordered to not let him cry if possible. His throat would collapse if he cried on his back therefore causing him to desat and then he would code. This advice from the ENT saved our son's life many times as we learned very quickly that GRAVITY was Luke's friend. He slept and cried on his side and this really helped.

At this point, Luke had been tested for SMA and many other MDA disorders and all were coming back negative. A modified barium swallow study showed the Luke aspirated both ways (refluxing and liquids going down his throat) therefore we opted for a gtube and fundo nissen surgery to be performed by Dr. Hermann.

Also, during this surgery Dr. Hermann performed a muscle biopsy for Dr. Iannaccone at 3mths of age. The muscle biopsy came back inconclusive and favored that I was gestational diabetic. Still...no diagnosis. Overrall Luke was in the NICU/PICU for 94 days.

As parents we were given the diagnosis of hypotionia and Laryngomalacia and we were told to come see Dr. Iannaccone after he was 6mths of age. (to which we did) Dr. Iannaccone, Dr. Gelfand (pulmologist), Dr. Tseng (Ent) and Dr. Conger (primary Pediatrician) were all followed up with during the 18mths of Luke's pre-diagnosis.

At 18mths, Dr. Iannacone scheduled an EMG showing that Luke's condition was specified at Congential Myasthenic Syndrome. 6 weeks later, we were at the Mayo Clinic taking blood tests to determine exact strand of the CMS gene mutation.

At 19mths of age, Luke's gene mutation was confirmed as the Rapsyn gene and therefore he was put on Mestinon medication and responding very well.

Birth pictures below ----minutes after birth

To be bold...this picture below scares the 'hell' out of me. Knowing that my child could not breathe upon birth and to have this picture is frightening. God saved our child for sure.
Oxygen going in on his face.
Me holding him 24 hours later for the first time at Lewisville Hospital and then moments later...Children's picked him up and transferred him to Children's downtown.

Luke is 24 hours old and when I saw him for the first time..he stared right at me intently. I will never forget the moment. He knew I was momma.

Pregnancy facts pre-Luke

I get asked all the time about my pregnancy with Luke. So, I wanted to recap my pregnancy.

Here is the summary:

• I failed my first glucose test at 23 weeks. I had to take a 4 hour test from that point and I marginally passed. I've been told that I would have been treated by most OBGYN's had they seen my glucose score.


• I also had horrific heartburn. I'm talking...seriously bad. I begged my OB to give me meds as I was taking 1 bottle of Tums per week. (not kidding) She would deny me medicine and again..looking back, many would have treated me. (I'll explain more later about my past OB)


• I was always thirsty. I'm talking seriously thirsty. I would drink 'a river' everyday. I had to go to the bathroom up to 30x a day. If not more. Nighttime was a nightmare. I got zero sleep as the heartburn combined with frequent urination was killing me. I was utterly miserable during my pregnancy.


• YES! YES! YES! I felt Luke move in the womb constantly. I get asked this question all the time. He was a kicker! He kicked me constantly and the only thing I can remember about decreased movement was more in the last 3 weeks. He was so large and my womb was only so big. He literally was 'stuffed' in my womb towards the end. HENCE, the positional contractures. ****Interestingly enough, our Mayo Neurologist asked if Luke could always kick his legs post birth. YES! He's always been able to kick his legs. (so, we are thinking his legs were the kicking I felt instead of arms? We just have no clue?)


• I had 1 sonogram at 17 weeks and 1 sonogram at 23 weeks. The sonogram at 23 weeks was because I kept feeling a tightness in my chest and it was very scary. All turned out 'normal' and nothing was flagged.


• Thanksgiving was rounding the corner and Luke was originally due on Dec. 7th. I was so miserable that my OB said we would induce on Nov. 21st. My current OB told me that she never would have induced Luke at 37.5 weeks gestation as little boys need more lung growing time. She was right! Luke had to be intubated immediately. (*being an IDM child did not help)


• My OB induced me as scheduled on Nov. 21st and and Luke was born at 7pm (ish) that night via C-section. He was immediately intubated.

The remainder of Luke's story is on the link called: Luke's birth story

Here are the pictures of me right before delivery--as you can see..I was huge and Luke was turning my stomach sideways.

It's important to note that my OBGYN during Luke's delivery 'fled the scene'. She never checked on me when Luke went into the NICU but 1 time and that was within 12 hours of his birth. I went back 2x for follow c-section questions and concerns and she was conveniently "out of the office". I was forced to switch OBGYN's when Luke was 1 month old.
I later found out that she has a history of neglecting her patients and has been in 3 civil lawsuits that we know of.