Emily's Story

iVillage Member
Registered: 05-29-2004
Emily's Story
2
Wed, 10-27-2004 - 10:30pm
I lost my third child 25 days ago. If that is not enough to depress me, she was the victim of medical negligence, and her cause of death was completely unrelated to her condition and 25 days later I still do not know what happened. I am attaching her story from one of my recent posts on her care page. It is basically an abridged summary of her medical history.

OCTOBER 16th, 2004

This morning I woke up thinking about something my dad asked me, if we were going to donate any of her organs, to which I replied "she didn't have any good ones." He seemed a little shocked and said what about her eyes?, and I reminded him that she had Horner's syndrome.

The truth is she was born with a congenital heart defect and even though she was 22Q that was really her only problem at birth. Even though she had a 6/6 murmur (the loudest) she was still a pink tet, which means right from the begining she compensated very well. That first surgery, the BT Shunt, complicated her anatomy by lacerating her esophagus (now she has GI problems), clipping off her right pulmonary artery, (no idea what kind of damage is done to a lung that does not get blood for 72 hours) causing a stroke (damage to her brain) and we got that from the neuro docs at UNC during that first admit, placement of the shunt causing a lack of blood to the left vertebral artery in the brain (contributing to the stroke and narrowing of this artery on later MRI's), The laceration of her esophagus caused barium to spill into her chest cavity, (causing scar tissue to damage her left lung) and rests permanently on her diaphram (that does not help with the movement of said diaphram). Some how gave her Horner's syndrome during this surgery also. So they leave chest tubes in her for more than 20 days, big surprise she develops blood infections and endocarditis. Because she is NPO for more than 20 days at the tender age of 5 weeks, we spend the next year trying to get her to feed by mouth, which she was doing just fine before the first surgery. I have to learn how to put NG tubes in my daughters face, because of that first surgery.

Amazingly enough we get to CHOP and her OPEN heart surgery goes off without a hitch, she extubated in 9 hours, and the chest tubes are removed in 24 hours, other than arrythmia and a pulmonary valve murmur, which are normal by products of TOF complete repair, we walk out of the hospital happy and healthy 8 days later. This is a perfect example of how much better she would have fared had the first surgery gone better.

So far we have problems with the brain, heart, lungs, left eye, and diaphram. Then we cruise into 2004 with a significant history of lung infections (big surprise), and I am being told she needs a G-tube to make real progress with getting her to eat by mouth. So I try to do it UNC's way, yes I still haven't given up hope for them, but after a very frustrating month and a half of peripheral problems (hypoglycemia and bouts of diarrhea) I take her to CHOP where they do all the tests she needs, angioplasty, MRI, and places a PEG tube, with nary a hitch in Emmy's stride. They tell me to take her to a local hospital to have the PEG switched to a MicKey in 6 to 8 weeks. The first appointment I could get was 10 weeks out, which is fine by me, I am little battle weary at this point (again big surprise). In those ten weeks Emmy goes from refusing anything by mouth to eating something by mouth at every meal. Not enough to sustain her, but the progress was amazing, I really thought maybe we had turned the corner, there was some concerns about her heart, stenosis and we were working on that, then I took her on June 15th to get the MicKey, and my life came to a screeching halt again. Now we have an ACUTE case of peritonitis, now our stomach, liver, right kidney, bladder and intestines have abcesses attached or among them, the pressure in her abdomen is making it difficult for her already abused lungs and heart to do their jobs, and of course a systemic fungal infection with a 40% mortality rate. They have to enter abdomen twice to lavage all the junk out.

She never really bounced all the way back from this one. We were in the hospital every couple weeks to NPO her, give her some kind of med via IV, start her feeds back and send her home, where in a week or two we would be back at the hospital to NPO her, give her some med via IV and start her back on feeds....

Is there any wonder why I kick myself in the A#$ everythime I think about how I should have just taken her to CHOP that first time, she would have had a completely different life.

Still when you consider there was alot of doubt whether she would have made it out of Duke after the peritonitis, and how much of her vital organs had been hurt or damaged (Brain, heart, lungs, left eye, diaphram, stomach, liver, right kidney, bladder, and intestines) that I was able to have her for 17 wonderful months. It is a miracle that she was such a pleasant little girl, who would hug and pat me on the back, even when she was dying. I have to thank God for every day I had with her.

At the funeral the priest said I do not believe it when people say it is God's will to take little children.... is it the free will that God gave man that sometimes causes God to bring the little ones home. I can't blame God but I can blame the men who had they paid a little more attention to their jobs, missions, would have saved my little girl untold suffering. I can thank God for the men who helped make my little girl's life better while she was here. I can pray that God or someone is playing with my little girl in heaven and that she is finally walking and running, like I am sure her spirit longed to do.

iVillage Member
Registered: 10-04-2004
Wed, 10-27-2004 - 11:16pm

WOW! You HAVE been through a lot!


I understood all of it, being a pediatric gastroenterologist who recently changed fields to developmental pediatrics. And I am heartbroken to hear of all the SNAFUs along the way.


All I can say is that what spoke to me most is when you said that "she was such a pleasant little girl, who would hug and pat me on the back, even when she was dying. I have to thank God for every day I had with her. " Hang onto that. What I love most about kids, is that they have a resilience that adults don't. They don't worry about all the stuff we do - they just act like kids! And I guess I believe we all have a purpose here on earth, and when we have achieved it, it is time to make our transition, whatever our age or station in life. And maybe her's was to give you the opportunity to love her and be a great parent and her biggest advocate, and to give her a chance to

peace and love,

just_a_big_kid

Avatar for all_girls4me
iVillage Member
Registered: 03-26-2003
Thu, 10-28-2004 - 1:26pm
Lots of hugs to you. I was crying reading your story. I have 3 little girls and they are the light of my life. I commend you for holding up and remembering her great personality. Please hang on to that. I will be praying for you and your family.

Hugs Ilka



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