Tuesday, February 11, 2014

"Living with Scars" project

Hello and Welcome to the Blog. Today we are celebrating our three year Birthday! It's so exciting to be able to connect with so many people on line through face book, our blog and through email.

I wanted to start a "project" to educate people on what congenital diaphragmatic hernia truly has come to mean to so many. My daughter is not at all shy about her scars. She knows that without them she would not be here today. I make an effort to kiss her scars and tell her how beautiful she is to me. The older she gets the more and more she understands that not many people have vivid scars like her. She is Blessed to be alive!

I hope that you will all join me in getting the word. Many times CDH is spoken in the cdh community and we all know the definition. However our friends and family rarely know that cdh is as serious and life threatening unless they walked the road along side of us. We need to educate the outside world.

Before I was pregnant with Ava I had never even heard the words... congenital diaphragmatic hernia. I had heard of "a hernia" in fact my Dad had one for years. It bothered him but wasn't that big of an issue. When the doctor explained at out 19 week ultrasound that this is what our unborn daughter had I was thrown off guard and wanted to protest. My other two daughters were born healthy and it just couldn't be. The more he kept talking the more I knew this was very serious. They offered termination and then it hit me... she was most likely going to die after or even before birth. I searched the internet with some VERY scary facts. I found no one that gave me a good outcome. I couldn't find any survivors. Surely there was someone out there? My husband urged me to stop looking online, instead I looked at top CDH hospitals. We found one that fit our needs and with much prayer and guidance settled on it. This hospital gave us what we so desperately needed... HOPE.

So when I started Raising Healthy Congenital Diaphragmatic Hernia Children, three years ago I knew I had to connect people and show them not only were there survivors out there but that most thrive after their long difficult births. Yes many have life issues such as feeding difficulties resulting in low weight, asthma, bowel obstructions, reherniation, reflux, scoliosis and many other things but they are still kids with LOTS of life to live!

Will you join us today?

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Here is my daughter Ava.


What do I think about when I see my daughter's CDH scars?

I have a feeling of complete gratefulness that she is here with us today. I feel very blessed! It shows how hard it must have been for her. It reminds me never take life for granted, that we are never assured tomorrow. I know that her scars are just part of who she is... a fighter in all sense of the word. I am SO proud to be her Mom!

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm allowing part or sometimes all of the organs from the belly (stomach, spleen, liver and intestines) to go up into the chest cavity, compromising the heart and lungs.

I really appreciate all the CDHers out there. The Moms and Dads... you make it possible for the page to be a helpful to other parents. I started with only a few cdh friends and now it has exploded and we are in all parts of the world. Thank you so much for making the page and blog possible!

~Terri Helmick Founder and Creator of Raising Healthy Congenital Diaphragmatic Hernia Children

Saturday, June 29, 2013

Featured CDHer~ Tracey

 

tracey

My name is Tracey and I am a cdh survivor. I am 33 years old. Back in 1980 I was born with a left sided cdh. I wasn't breathing so I was life flighted to another hospital. I went through 12 hours of surgery and given a 40 percent chance to live. I was given my last rights several times and they had to bring me back once also. I had a breathing tube put in my left side because my lung collapsed. I was put on oxygen and stayed in the nicu for 4 months. When I came home I was still on a feeding tube until 6 months. I managed to live a pretty normal life. I have had 3 healthy children and 8 surgeries to correct problems from my anatomy being a mess with my most recent open abdominal surgery to remove my appendix which was attached to  my spleen. Also my doctor removed a lot of adhesions and tried to rearranged my malrotated intestines. All of my large bowel and colon was  on my left side and all my small bowel was on my right side. I also have a kidney that is upside down. My liver is in the center and looks like I have two of them. Everything works correctly so I guess I can't complain. I keep on going and take one day at a time. To all of you who were born with cdh never give up. I have made it this far fighting and so can you!

~Tracey

Tuesday, March 26, 2013

Featured CDHer~ Courtney


Courtney


Hi my name is Courtney I am 23 years old. I was born May 24, 1989. My mother found out about my Cdh birth defect at her 12 week ultrasound. This was a very new birth defect to doctors at the time in Springfield, Mo. I was born via c section and immediately was rushed into surgery to repair my hernia with a patch. I stayed in the nicu until mid July. My Cdh caused some my left lung to not fully develop. My mom soon realized I could not hold formula down well. When I was about 5 I started choking. My earliest memory was when I was 7 years old and choked on a piece of chicken my mom rushed me to the er and I had to be put under to get the chicken pushed through to my stomach because it was so wedged in. About the same time I started going to my Pulmonologist (lung doctor) to have breathing treatments done, and they referred my mother to a Gastro doctor at the children's hospital in st.Louis,Mo because I was choking every time I ate. At the time in Springfield they did not have a children's doctor for this. We made the 3 hour trip when I was 8 years old and I had my first scope done. We found out that my esophagus was 5mm around and it was supposed to be 30mm around. They immediately stretched it with a balloon. I had to go back every 6 months they stretched it every year. I then found out o have gastroenteritis reflux disease. I started off on Prevacid one a day but I was having so much acid they kept raising the dose. They monitored me once and I had over 200 separate episodes of acid in one night. In school I had a inhaler for gym because I could not run long because of my lung capacity. By the time I was 20 I was on 6 Prilosec a day for my acid reflux. At 21 I got pregnant with my daughter I quickly found out 6 pills a day was against the federal recommended dose so they lowered me to 3 a day and they said that was safe for pregnancy. That was my only issue through pregnancy was my acid. I was so worried something was going to be wrong but I am happy to report that I had a healthy pregnancy and I now have a healthy 2 year old. I no longer have to go to my lung doctor, I just don't run for a long distance. I do see a gastroenteritis adult doc now and I had my last stretching a year ago and they said everything is looking wonderful. I only go back if I start choking again which will result in stretching. My esphogus is 25 mm around now and I can eat anything I want. There were times in life that I got very down and was very ashamed of my scar but I am finally accepting that it is my story and I am not ashamed. I never take a day for granted and am so happy to be here. I just want to give everyone some hope for their children. My mom will cry at the drop of a hat when it comes to my health so I definitely see the pain it causes but I just remind my mom I'm okay and I'm still here and so thankful. Just never lose hope.

(Here is Courtney and her daughter.)


~Courtney Boyce

Monday, October 1, 2012

Featured Child~ Andy

 

ANDY 4

I found out we were expecting our fourth child in January 2011 at about two weeks. Due to my history, the doctor wanted to see me ASAP. I went in at six weeks along. Everything looked great. Then around eight weeks I became very sick I was in and out of hospital for IV fluids and medicines.

At twelve weeks along, on a Wednesday I had a home nurse come out to show me how to use the Zofran pump. (For those that don't know this is a slow steady flow of medicine running all the time to help with the sickness.) I had lost 20lbs. A small needle was put through my tummy that delivered the medicine.

The next day I was at work. I worked with preschool kids at my church. I thought I had peed myself as it tends to happen in pregnant women. But little did I know what was about to happen. I had started bleeding everywhere. I was rushed via ambulance to the nearest hospital. I thought I was losing the baby. The doctor wasn't sure if the baby would make it let alone myself. I was diagnosed with Subchorinic Hematoma (SCH).

I was followed very closely until my thirty week point by my OB and a specialist. I had two blood clots in my uterus along side of the baby. They cleared up at twenty-eight weeks. I was told all was good the baby was large and growing fine I came off bed rest around thirty-two weeks when I had the finally all clear and my baby boy was doing good. So our fear of premature birth was gone. No nicu stay was going to happen.

We were all good right there right up until inducement day. My husband and I had this really bad feeling. My thoughts were... I don't want to have this baby. Something is wrong. We got to the hospital at 7:00 and he was here at 10:28am weighing 10lbs 4 ounces and 22 inches long. He was blue and not breathing.

ANDY-1

No one would tell me what was wrong. They all turned from me and were crying. I had been given the chance to hold him but said no cause I figured I'd get to hold him after he was cleaned up like I did with my others. We didn't know he was sick.

They took him out in the incubator. They tubed him and came in and told me he had aspirated. I was ok with that. I knew what that was and it would just be a couple days in nicu. Then came the bad news, the doctor said "I have some upsetting news, Your baby has congenital diaphragmatic hernia." I said, Do what!!" And then he explained that he had a hole in his diaphragm and his organs weren't in the right spot.

ANDY 3

His hospital keep getting changed due to them not having the right equipment like the ECMO. We finally had a hospital for him to go to. The place I delivered didn't even have a nursery for babies. He was transported by the angel team that evening by the time they got there had him all hooked up and sedated. They told me to say my good byes because they didn't know if he would make the transfer or thru the night. I couldn't go because I had just delivered a baby. I told my doctor I wanted out first thing in morning and I was. With a cracked tailbone I made my way down to Children's hospital, a an 2 hours drive away.

Andy was on a vent that was breathing for him and on a lot of pain medicines.

ANDY 5

Things are hard to recall everything as I was in shock, mad, upset and in a lot of pain both mentally and physically. I didn't understand why I was told everything was finally ok and it wasn't. From what all I can remember he only had his intestine in his chest he had a 30% hole they said he has stitches mess and the Gortex patch. He had pulmonary hypertension.  He was born on a Monday had his repair on Friday. It took couple hours at least 5 hours cause I had to pump twice why waiting. I was so worried about going to pump in case the call came in and something happened.

All went well he had it done laparoscopically. He has about a three inches scar on his back and a couple small holes under his arm by his shoulder, where he had a chest tube. He had fluid in his lungs it was a nasty color when it drained out. We were told he would come home until Christmas then it was Thanksgiving it just keep going back and forth.

We still had three other boys to take care of and tell them what was going on it was very hard they didn't get to see their baby brother until he was almost a week old after surgery.

ANDY 2

We were scared that he wasn't going to make it. He develop some kind if infection so they gave him high dose of antibiotics.

It was a roller coast. His vent would be turned down and he would be doing good. We would get home and call to check on him and he wasn't doing good and had to turn the ventilator back up. I finally got to hold him at nine days old. The next day he came off the ventilator.

Then came the feeds, he wouldn't eat for the nurses but would for me I wasn't allowed to stay with him at night so during the daytime he would take a bottle and at night would be feeding tube.

ANDY 6

He was still having trouble with his breathing and heart rate going up when he would eat. After two weeks of feeds and finally gaining weight, they allowed him to breastfeed and he had a hard time with it. He couldn't breath so it was back to the bottle which at that time I didn't care I just wanted him to eat and come home.

Two weeks old they moved him to another room where I could stay with him. He came home right at a month old. He needed no oxygen! He did need reflux medicine and had to sleep upright cause of reflux and sometimes he would stop breathing if laying flat. He develop another hernia which they are watching now closely. He's one and is into everything. We still have problems with him not wanting to eat or choking on his bottles. He has immature swallowing food allergies and they keep finding more things wrong as he grows. He's a happy sweet loving little boy.

~Amber Parker (Andy's Mom)

Monday, June 4, 2012

Featured CDHer~ James



My CDH warrior,James was diagnosed with a LCDH at an 18 wk ultrasound when the technician noticed that his heart was pushed over a little to the right side. In 1992 there was no internet to turn to to find out information. Our only resource was the local library. Needless to say there was not much information and what there was was very technical and scared us to death. We were living in a small town in Texas at the time and my OB said that we wouldn't be able to deliver our son in the local hospital that we would have to go to Dallas to deliver him. We were given I referral to a high risk ob in Dallas. That first ob suggested that the best option would be to terminate the pregnancy. We told him that that was NOT an option for us. We found another ob who was wonderful and never once mentioned terminating our son. He arrived in the world at 4:15pm on June 10,1992. 


They immediately intubated him in the delivery room and rushed him to the NICU. I got a quick glimpse of his beautiful face as they rushed him by me. Not long after, they brought me consent forms to sign for them to do whatever was necessary to save his life. At approximately 8pm that night his organs began to fail and if it weren't for ECMO he would have died that night. The surgeon did his repair the next day. He came off of ECMO after only three days (the shortest amount of time up to that point for a CDHer). The neonatologist showed me an x-ray of his lungs and told me miraculously his left lung just opened up and he was able to be removed from ECMO. He remained on a ventilator for 17 days, then cpap, then just the nose canula.








He was breathing room air before long and after eight weeks was discharged and able to come home with us.


He did not need any oxygen support or monitors or even a feeding tube for when he came home. All of this was new and terrifying for us because we had 2 healthy girls at home.




James had feeding issues and massive reflux and needed a Nissen fundoplication when he was three. 



He had respiratory issues and was hospitalized a few times with pneumonia and RSV. He needed another Nissen when he was ten due to going through a growth spurt and his first Nissen coming undone.




He has a slight learning disability but graduated high school with a regular diploma.




He has fought and worked very hard and I am so proud to be his mom!


~Elizabeth Randazza







Tuesday, May 15, 2012

Featured Child~ Benjamin




Benjamin Adam Walker was born October 2007 after an uneventful pregnancy, by planned c-section at thirty-eight weeks due to him being breech. Full term he weighed 3 lbs 11 oz and was in respiratory distress. Since it was a planned C-section there was a NICU nurse there who got him quickly to the NICU and on a ventilator.


Within an hour we were told his diagnosis. Left sided Congenital Diaphragmatic Hernia. We had never even heard the term before, and now our son was born with it. His liver was the only organ that was not in his chest. He struggled to breathe, as the Drs struggled to stabilize him, his blood gases were very high, over double what would be considered safe to operate. When he was 36 hours old, we were told that there was no more they could do at this hospital and he needed to be flown to CHoP where they had an ECMO machine, and that would help stabilize him and give him a chance to have the surgery. There was a bed available for him, and they were arranging for the helicopter to come and get him. We live about an hour and a half from Philadelphia, so we began making arrangements to get me checked out of the hospital and get ready to go.

Ben had other plans. They had to take one last blood gas to give the flight team the most current numbers. Those numbers came back almost half of what they had been, and the surgeon felt confident he would be better off staying where he was and having his repair surgery there. So we stayed.

The next day, he had the surgery and we were cautioned that he was not out of the woods, and that he still had a long road ahead. In the NICU he needed 3 blood transfusions, dozens of x-rays, 2 weeks on a vent, 2 weeks on cpap, a week with a nasal canula, IV feeding, NG tube, a chest tube, MRI’s and countless other tests and procedures. We were able to hold him at 12 days old, and we did as often as we could.


He struggled, but made good progress, and was eating out of a bottle by 5 weeks old. He spent 6 weeks in the NICU and went home on only an apnea monitor, and a calendar full of Dr appts. His left lung did not form correctly and he had a difficult time fighting germs, so his first year he had limited contact with other people. He needed to be followed by a pulmonologist, optamologist, his surgeon, a neurologist, a cardiologist and of course his pediatrician.

For the first 10 months he did fairly well, though he remained small and growing slowly. By 10 months he had completely fallen off of his growth curve, and we started seeing a Pedi GI. By 13 months, he was diagnosed Failure to Thrive (a diagnosis that just about crushed me), severe food allergies, Reflux, and Eosinophilic Eoshphagitis. He was placed on an elimination diet in which he was only allowed 4 foods. Chicken, sweet potato, prunes, and barley. Elecare was and is his main source of nutrition. He had a difficult time feeding and vomited upwards of 12 times a day, everyday. By the he was 19 months old he was admitted for placement of an NG tube, and he had that for 5 months. He began to grow, and he even started to get hair! He however, still was vomiting all the time and could not eat anything beyond Elecare.

We saw several GI drs, and they all said the same thing. He has allergies, EE, and Reflux. The vomiting is fine. They prescribed zantac over and over. It didn’t help and I stopped filling the rx. At 2 ½ he was admitted for placement of a G-tube, repair of an umbillical hernia as well as surgery to move his testicles down, as they were too high.


Within a day of the surgery he got very sick. He had a thick tube placed in his nose and down his throat, and that and the G-tube were used to drain green billious from him constantly. After 2 days of him getting sicker, he had a bowel test and it showed a complete intestinal block. It was 10pm by the time we got the results and the surgeon said the surgery had to be done NOW, so he went into Emergency surgery late that night.

We were warned just how serious it was and he may lose part or all of his intestines. The surgeon that performed the surgery was the same that did his orginal CDH repair. The block was from his intestines adhering to his synthetic diaphragm and slowly cutting it off. The surgeon said the biggest indicator we would have had to a problem was he would have had intense constant vomiting.

HE DID. I TOLD EVERYBODY. NOBODY LISTENED.

He suffered for a year and a half, he almost lost his intestines and he almost died because every doctor we saw was quick to say he vomits because he had reflux.

After that surgery he did well for a few days, but then again became very sick. His incision was red and swollen and obviously infected. By this time his surgeon had left the country on a mission trip and there was no covering pediatric surgeon. The only other in the county was at a hospital about 10 miles away, so after 10 days in the first hospital he was transferred by ambulance.

He needed ANOTHER surgery to open the incision, clean it, pack it and get antibiotics in. He was in that hospital for another 3 weeks, and was put under daily for the first week, and every other day after that to clean the wound and repack it. He spent all of that time on round the clock antibiotics to get the infection under control.




The would was left open to heal and we cleaned it at home and kept it covered, and him away from other people again for another 2 months so he could recover at home. It took 3 full months for his body to heal from that ordeal on the outside and much longer for him to get past it, though I think he will always carry part of that trauma with him. To this day I can not take him to the dr without giving him a complete run down of what is going to happen, why we are going, and what we are going to talk about.



Today he is a relatively healthy 4 ½ year old who keeps us laughing, keeps us busy and makes us grateful for everyday we get. He still suffers from food allergies and EE, so there are not many foods he can have, and he will likely always depend on Elecare to thrive, but he is THRIVING. He is now on the growth charts (at the bottom, but on there!) He needs 2 to 4 breathing treatments a day, is on several medications for the EE, reflux and seasonal allergies and is G-tube fed at night to help him get the calories he can’t take by mouth. He drinks the Elecare well but simply can not get enough in by mouth to grow.

His lungs are still fragile, and it takes him weeks to get over a “simple cold”. Some days are great Some days are incredibly hard, and we live with the constant fear that his patch could break, but we pray daily it does not happen.

~Katherine Walker