Friday, October 23, 2009

My heart goes out to parents who have lost children


While following the heartbreaking story of Somer, the 7 year old little girl whose body was found in Florida, I wanted to extend my sincere sympathy to those who have lost a child.

Motherhood came easily for us but, it was quickly taken away with one of our children. My children are my light, my joy...my life! Without them I would be lost.

During my pregnancy in 1999, we knew something was wrong but, they never did figure out what it was. I experienced a lot of painful cramps and my stomach was growing considerably too quick. I took care of myself, ate well, took medications as directed and went to all of my appointments. It wasn't until the beginning of August when the Doctor found that I had severe polyhydramnios and scheduled an appointment for an amnio to remove some of the fluid.

Polyhydramnios:
Polyhydramnios (polyhydramnion, hydramnios) is a medical condition describing an excess of amniotic fluid in the amniotic sac.


Unfortunately, I didn't make it to my appointment as I went into labor a couple days before. They attempted to stop my labor and administered steroids to help her lungs grow. I went through this process for three days when they realized that my labor could not be stopped. I was too far along in the labor process and it was time for her to enter this world.

Kayla was born at 31 weeks, weighing a mere 4lbs 5oz. She was the beautiful, an angel sent from heaven. Kayla had a very weak cry and they immediately took her away from the room and placed her in the ICU. It seemed like hours before the Doctor came in and told us what was happening. My beautiful angel was suffering from a Congenital Diaphragmatic Hernia and was premature.

Congenital diaphragmatic hernia (CDH) is a term applied to a variety of congenital birth defects that involve abnormal development of the diaphragm. The term is used most commonly in reference to Bochdalek hernia, however it can also apply to Morgagni's hernia, diaphragm eventration and central tendon defects of the diaphragm. A common theme in all scenarios is malformation of the diaphragm; this allows the abdominal contents to protrude into the chest thereby impeding proper lung formation. Newborns with CDH often have severe respiratory distress which can be life-threatening unless treated appropriately.


They decided to send Kayla to Kaiser in Hollywood, CA. that night by helicopter but, they wouldn't let me leave so my mother drove straight up there to act in my place for paperwork and decisions (She called me first before making any decisions on her care). I was able to leave the next day. I grabbed some clothing from home and we drove non-stop to reach our destination which was apx. 3 hours away. It was agonizing not being able to be with my daughter, we didn't know exactly what to expect or how long she would have. Our son was already with my mother, he was two at the time and didn't know what was going on.

Upon our arrival, we were taken directly to a room they titled "The quiet room" where they spoke to patients in private. The doctor explained the best that he could about what was going on and what she needed. They didn't expect her to live through the night but, wanted to stabilize her and attempt surgery once she was stable....that is, if she made it. The hospital kept her in an incubator and sedated. Miraculously, Kayla did stabilize enough for the surgery within a few days and they performed the surgery to repair the CDH. She did quite well but, something still wasn't right. Kayla improved for days after her surgery and then had to have another surgery which involved placing a "G-Tube" into her stomach for feeding.

G-Tube:
A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by swallowing. The state of being fed by a feeding tube is called enteral feeding or tube feeding. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities. A variety of feeding tubes are used in medical practice. They are usually made of polyurethane or silicone. The diameter of a feeding tube is measured in French units (each French unit equals 0.33 millimeters). They are classified by site of insertion and intended use.


I need to shorten this story as it could take me days to write...memories come and go and I try to suppress the bad memories but, they do come back as they have today.

Kayla endured a biopsy where they found that she had a chromosomal disorder called "Pallister Killian Syndrome" which was very rare.

Kayla had improved greatly and was eventually expected to be able to go home with us soon! We were so excited, I remember the first time I was able to hold her. I cried buckets of tears. The day came when she was going to be transported back to Bakersfield, CA. for care in the hospital that she was born. The doctor at that hospital had made a promise that she would take good care of her because, she was the only one who knew how to handle her case. Well...it didn't work out that way. We arrived and she announced that she was going to India and leaving my daughters care to another Doctor who could you believe asked US suggestions on her care? It was unreal!

The next day after Kayla arrived at the hospital, the nurses needed to replace her G-tube. They removed her tube and since they couldn't get the new one in, they placed her old one back in until they could get a different size! We were livid, that was not proper practice, even we knew this.

Kayla's life went downhill after this incident. Kayla became very ill and was placed back on the intubator because, again...she couldn't breath on her own anymore. Kayla became more and more ill within the next couple of days and then started developing constant seizures. One night, we had been awake for so long and exhausted, they pleaded with us to go home and rest for a few hours. They said that she was stable enough and they would call us right away if there were any changes. We shouldn't have went home....

A few hours after falling asleep, the phone rang...we received the call that she had taken a turn for the worst and to hurry back to the hospital. We didn't make it in time....she passed away before we arrived. We should have never went home. Her autopsy showed that she had contacted E-coli from the g-tube but, since we couldn't afford to pay a retainer for a lawyer, there was nothing we could do about it as no lawyers would take the case without one.

To make a long story short, my story is posted online somewhere. If you ever find it, please keep in mind that I was still in shock and there are several mistakes in the story. I just never re-wrote the story again and left it as it was.

The point of this post is that my heart goes out to those who have lost a child, I know the gut wrenching, heartache that comes with it and I wouldn't wish this pain on anyone.

I did have a glimmer of hope a couple years after she passed, I was given a 50/50 chance of this happening again in future pregnancies and I didn't want to go through this again. In 2001, Chloe was born into this world! She was healthy and oh, so beautiful. Chloe does have a low immune system and has allergies to some of the immunizations (Causes seizures) but, she is here with us today.

Please, hug your children and let them know just how much you love them. You never know how much time you will have with them in this life, it can be taken away far too soon.

This post is not for sympathy, I have learned to speak about my daughter through the years and sometimes, you feel the need to share about your loss.

In loving memory of:
Kayla Mae Michele
August 10, 1999 to October 17th, 1999




This picture was taken when she started to improve.

5 comments:

elliej on October 25, 2009 at 11:49 AM said...

My heart goes out to you Michele. Were there no Lawyers that if they didn't get money for you, it was free? That's ridiculous that they were not prepared before they removed that feeding tube. That is inexcusable! It sounds as though they gave her the infection had they known what they were doing it may not have happened. Unbelievable. Again I am so sorry and will keep your family in my prayers.

Ellie

CHERUBS CDH Non-Profit on October 26, 2009 at 7:48 PM said...

Hi There,

It's been years since we talked but I just came across your blog (a member e-mailed it to me) and read your story again. I remember beautiful little Kayla... she passed around the same time as my son (9/11/99). It's so hard to believe it's been 10 years. Congratulations on Chloe! I hope you are doing well! :)

Dawn

Michele on October 26, 2009 at 9:22 PM said...

Ellie,

Thank you for your kind words. No, we couldn't find any lawyers. My mother called around and checked with several and we had a consultation with a couple but, it didn't work out because, of the retainer they wanted.

Michele on October 26, 2009 at 9:26 PM said...

Hello Dawn,

Wow! It has been a long time since we've talked. Forgive me for not mentioning Cherubs in my blog post, I must have forgotten to add it while creating my post.

Thank you for visiting my blog, I would love to know who the other member is! I understand privacy so if she/he would like me to know then they will come forward.

I'm very sorry for the loss of your son as well. It was a trying time and I couldn't have gotten through it without the support of my online peers through cherubs and family.

Thank you for the congratulations on Chloe. We've had our challenges with her health for the first few years but, she is doing well now and we are very grateful.

Please, visit again sometime and you are more than welcome to send me an email as well!

Are you on twitter? I think I have you on myspace. I also have facebook as well.

Take care,
Michele

Loretta on November 2, 2009 at 11:15 PM said...

It seems like yesterday and yet so long ago. I think of her often and sometimes do the "if only" thing over the doctor's care and really wish I did everything possible to raise that money to bring those doctors from NY etc out. I met Glenda through Cherubs and we've been friends ever since and her Mindy turned 23 Oct. 24th! As you know she has PK. Hugs

 

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