Westover, Kara

[left:b21eef3c4d]http://www.cherubs-cdh.org/Album/new/westover-kara.jpg[/left:b21eef3c4d]I'll begin with my pregnancy. I had severe nausea and vomiting throughout the pregnancy, and was on lots of medication for it, and for my knee (I have a bad knee) anyway, I also had placenta previa, but other than that nothing else was discovered (that I know of). I had a planned c-sec at 37 wks because of the placenta previa, and when my little Kara was born (finally a girl I have 2 boys already) everything seemed to be ok, then they told me she was "grunting" and they wanted to take her to the NICU for observation, (I never got to hold her until later). I kept sending my husband to check on her, he kept telling me she was holding her own, and by that night they moved her back to the nursery, I thought my troubles were over.

Two days later she had blood in her stool, Ok I said I can deal with this my 2nd son had food allergies and reflux, so this was nothing new to me. So they changed her formula, a week later she was screaming all the time and still had blood in her stool and very watery diarrhea, so they put her on a special formula called NEOCATE, my son was on the same stuff there is nothing in it to be allergic to its all amino acids. Then they had to do upper GI, endoscopy, ph probe, sigmoidoscopy, and gastric empting. End result, delayed emptying, and severe reflux, (no problem been there done that). Then in January all hell broke loose!

Now comes the long detailed part bear with me! She was diagnosed with RSV, I had a nebulizer at home for my oldest son, and the pediatrician said to use it on her, it looked like she inherited my oldest lungs and my middles GI tract, oh what fun! Well 18 hrs later she started turning blue around the mouth so I rushed her to the hospital, they admitted her and were treating the RSV/Bronchiolitis. She had an o2 requirement and was in for 5 days, then they sent her home and 2 days later she was again turning blue, so back to the hospital we went. She needed o2 again, had very rapid respirations and heart rate, was in for 5 days, and then transferred to Mass General Hospital, after they did a chest x-ray and thought she had pneumonia. She was transferred because of the medication she was on for her reflux, and they wanted to start erythromycin, because she had not had her pertussus shots yet they thought she had that, and was not responding to the IV antibiotics they had already started. After she was at Mass General for 3 days they were finally able to take her off the o2, and wanted to send her home again, but I was scared to take her home because her respirations were still so fast and her pediatrician told me not to go unless I was comfortable. They still wanted me to go 2 days later but she was still breathing very fast and retracting and wheezing but they kept telling me she was fine, so I told them to transfer her back to our hospital where her pediatrician could watch her, so back to Winchester Hospital we went. Her pediatrician kept us there for 2 more days, and then sent us home with the understanding that a nurse would come to check her o2 levels 3 times a week or more if I wanted them to. Well after 4 -1/2 weeks at home she started turning blue again, and her respirations were over 100 breaths per minute, I called her my little heavy breather. All she did was breath and eat (if that). She was admitted again, and I finally convinced them to do another chest x-ray (they didn't want to do one to soon after the pneumonia). Well at first they said x-ray was fine, then my pediatrician looked at it and pointed something out to the radiologist, and he said it could be something, but it was a bad film so they redid it, and low and behold the same "spot" was there in the exact same place they saw the so called pneumonia. Well then it was decided that she should see the pulmonary specialist again. He saw the film and said it could be 1 of 2 things. Either a pulmonary sequestration or a Neuroblastoma, Man was I scared now, the thought that my 3 mo old has cancer scared the hell out of me. They scheduled a CT scan to determine which it was, but I had to wait 5 more days before they could get her in! On the day of the scan, they stuck her 7 times to get an IV started and were unable to do so, and wanted me to reschedule, I told them no way, do it now! So they did it without the contrast in it (big mistake). It was then determined that she had a pulmonary sequestration (wrong).

They told me there was no rush for the surgery it could wait till she was 3 or 4 yrs old (I think not) I told them no do it now, but they said to wait till after we got back from our vacation in April, so I said ok (my mistake). They were going to have to remove 1/3 of her lung, so I wanted her to see my mother in law again (just in case). Well surgery was scheduled for May 4, we got there, they started and 5 hrs later they came out and told us that it was not her lung after all, she had a Diaphragmatic Hernia on her right side, and that her liver had poked thru the opening (they were unsure at first what it was they had to do a biopsy on the tissue) but attached to this so called mass that they saw (her liver) was an extra artery, no one had seen this before. Well they fixed the diaphragm and put the liver back where it belonged and tied off the artery. They were concerned that the extra blood flow had damaged the heart so we had to go thru all sorts of tests to make sure the heart was ok, it was slightly enlarged and so were some of the vessels in her lungs, from the extra blood flow, but they think it will go back down when the flow adjusts itself? She was in the hospital for 5 days with chest tube and o2 for 4 days, then they wanted to send her home again I was nervous because her respirations were still fast and she would drop her o2 in her sleep, they told me it was normal after chest surgery to do this, so they ordered the nurse to come out again to make sure she was holding her o2. Well 4 weeks later she started having breathing problems again, wheezing and coughing (this time they think its asthma related).

After reading all the stories I have read so far, I guess I shouldn't complain. It sounds like I had it easy, but what ticks me off is that I found out that the so called mass was seen back in December when she had her upper GI, they thought it to be lung tissue, it was also missed during her endoscopy, chest x-rays, and CT scans! And why was it never picked up on my ultrasounds I had at least 5 of them with placenta previa! My pediatrician has been great thru all this he calls me at least 1 a week to check on her, and told me he was glad I was so pushy and didn't want to wait for her surgery, had we waited she would have gone into heart failure because of the extra blood flow. To this day they still don't know why that happened, 1 theory is that she did have a sequestration that aborted itself in utero but the blood supply stayed? She has stumped them all around here! They will have to keep doing ct scans and chest x-rays to make sure the blood flow doesn't reattach, and so far she is having developmental delays, and constant respiratory problems, what her lung capacity is or what type of repair the did I have no clue!

Thanks for being patient with my story! The picture that is attached is from April when she was 4 mos old (prior to surgery).

Written by Kara's mom, Karen Westover (New Hampshire)
1999