Pennsylvania CHERUBS Blog

Member Stories

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My name is Kate Crawford. My daughter, Shannon Elizabeth is a non-survivor of CDH. I was very excited during my pregnancy. Shannon was my first child and daughter. We found out at our first ultrasound that Shannon had CDH. We were told that it was unlikely that she would live after she was born. We were determined to help see our baby through this defect. Shannon was born on Januray 16, 2007. The next day, it was discovered that she also had Hypoplastic Left Heart Sydrome. The combination had a one percent chance of survival. We decided to let Shannon go January 19, 2007. Since then, I have suffered a devasting miscariiage of my “Peanut Shelbe” in September of 2007. In Januray of 2008, I found out I was pregnant once again. This time there was a twist . . . two girls! Lily Anne and Gracie Kathleen were born August 28th, 2008. After a short stay in the NICU, both girls are now home, happy and healthy. We will always miss and love Shannon, our Princess Angel.

 

Annalise Lawrence

My husband and I found out that we were pregnant one night when decorating the house for Christmas. We were finally starting a family, and soon found out that our baby was due on our fifth anniversary. We chose to have the baby at a Birth Center across from the hospital to enjoy having a baby naturally. The pregnancy was normal in every way. We had an ultrasound at 20 weeks (but we did not want to find out if we were having a boy or girl). The ultrasound turned out normal and the due date was accurate to the size of the baby.
The babies due date came and went, and we tried everything to get the baby to come. We tried little things such as walking and evening primrose to drinking Castor oil. Despite my efforts the baby was comfortable right where she was. So the midwife said since I was two weeks over due we would have to go to the hospital to have the baby and be induced. I was a little disappointed, but I understood that it was the safest thing to do. The night before my induction they had me check in the hospital. They placed cervidil on my cervix to prepare me for induction, however that put me into labor, and 10 hours later at 6:32 AM Annalise was here! I had her “naturally” and as soon as she was born they placed her on my belly and I found out I had a little girl. She was a perfect size 7 pounds and 11 ounces, and 19.7 inches.
They proceeded to wipe her clean as she attempted to breath and tried to cry, but her cries were very small which worried the nurses. As soon as they cut the umbilical cord they brought her over to clear her airway (because they thought maybe she just had some fluid in her lungs.) After a minute or two she was still struggling so they gave her some oxygen and called the NICU up to check on her. Soon following they brought her down to the NICU and stabilized her with a CPAP because her oxygen was falling when she did not have it. They found that her heart sounds were in right side of her chest. They did many tests and then did an x-ray and found that she had left sided congenital diaphragmatic hernia which caused bowel to come up into her chest and her heart displaced into her right side, with her right lung clear. They then proceeded to intubate her and make arrangements to transfer her to a children’s hospital.
In the meantime I don’t remember what I was doing or thinking until they brought us down to see her in the NICU. I saw all the tubes and machines, and heard all of the beeping, etc. It was all very overwhelming and I didn’t even understand what was wrong. They explained what the machines were doing but all I wanted to do was hold her and I couldn’t. We left the NICU and cried, all of us. My husband took care of all of the transferring choices and information, and the Neonatoligist came in and explained to us exactly what CDH was and how her organs were displaced and they would have to do surgery to fix it. All of the explanations made sense to me, but all I could think was what did I do wrong that caused her to have to go through this? They brought us down one more time to see her before they transferred her over to St. Christophers Hospital for Children (SCHC) in Philadelphia, it was only a minute and then they asked us to leave the room as they prepared her, and then she was gone.
I was very tired since I had been in labor all night and had not gotten any sleep. So I rested a few hours which I really needed since I was exhausted physically and emotionally. After waking up and letting my husband rest I really wanted to see my baby. I told my mother that I wanted to go see her and leave the hospital. The nurse came in and told me that wasn’t such a good idea. She recommended that I stay the night and get some rest so I could be well rested to make decisions for the baby, and I am so glad I listened. We stayed there and I began pumping milk so that I could save it for the baby when she started to eat. Sometimes I felt like pumping was the only thing I could do to help my baby.
We left the next morning to meet Annalise at the NICU of SCHC. They had her placed in the corner of the room with the lights off. She had, what we liked to call, a tee-pee over her head to keep the light and sound out. They did not want her to be stimulated in any way to keep her respiration and heart rate down. My heart ached for her, and it was hard to see such a little person with so many “things” attached to her to keep her alive. Fortunately she had not been placed on ECMO, and as long as she maintained her stability she would not have to be placed on the ECMO machine. The first few days were a lot of watching and waiting as they slowly lowered her oxygen support and prepared her for surgery. The surgical team came to us and said that Annalise would be a good candidate for a surgery they had never done at St. Christophers. The wanted to do the surgery arthroscopically which they had not preformed on an infant with CDH, they had done it on older children, but not on an infant. So, instead of cutting her abdomen open they could use a camera and two small tools to sew her diaphragm and move the bowels down where they belonged. After asking doctors the differences between the two types of surgery we decided to do it Arthroscopic. On day five they did the surgery. It was a Monday morning, and we all got there early to talk to the surgeons before they took her in. We asked any questions we had, like how long, and the what if questions. The surgery was supposed to be around three hours and the three hours came and went. We sat waiting while trying to distract ourselves with the ridiculous shows on daytime television. Finally a nurse came in and said she was out of surgery and that Dr Moront (her surgeon) would be in to see us. He finally came in and said that the surgery went well. What a relief that was to hear. They began the surgery trying to push her bowels down through the left side where they had found her hernia in the x-ray. After a couple of hours it wasn’t working and they were going to proceed to open her up and see why it wasn’t working, and when they turned the camera angle they found that she actually had a hole on both sides of her diaphragm. They then proceeded to push the bowels down the right side (which fit a lot better) and then sewed her diaphragm shut, just as it is supposed to be. She was fortunate enough to have enough tissue on her diaphragm that they did not have to put a patch in on either side. They sewed her up and let her lungs and heart move back by themselves.
Annalise was very swollen after her surgery. They began to slowly wean her off of everything. They had been keeping her sedated before the surgery, and they began to take her off of that medicine. She was on pain medication and antibiotics for her surgery and they began to slowly take her off of that. One of the best days was when she was alert enough that she opened her eyes for the first time; it was the best thing I had ever seen in my life. They also began to lower her oxygen they were giving her and only had one minor set back. She had a chest tube to suction out the extra fluids created from her surgery and a few days after the surgery they took the chest tube off of suction so the fluids would drain naturally, but it was also helping her lung stay open on the left side. So when they took the suction off the lung began to collapse. So they had to keep the suction on for another day or two until she was more stable. About a week after the surgery they took her off of her ventilator and we could finally see her cute face, and most importantly we could hold her.
At that same time (at two weeks) they began to feed her. She had some issues with feeding. They began to give her Reglan and that improved feeding. A few days later she was having some problems with reflux, which is very common with CDH, so they placed her on Zantac. She was off most of her medications after 2 ½ weeks, the only thing she was still taking was Reglan, Zantac and Tylenol for pain. However she still had not been able to gain weight, so the last week was a little stressful trying to get her to eat so we could just take her home. It had been 2 weeks and six days since she had been born and I was at the hospital by myself when the nurse came in that afternoon and said, you get to take her home today! It was like I had just won the biggest prize ever, I get to take my baby home. They explained how to give her the Reglan, Zantac and Tylenol, checked the car seat, signed some papers and we were on our way home. We had her first follow up appointment five days later, and everything checked out except for her weight, she was still only 8 pounds, the same weight she had left the hospital at five days earlier. So our appointment a week later she had finally gained some weight and we were home free.

Annalise was born on August 30, 2007 and she is over a year old now. She is a very social, happy baby that is spoiled by her grandparents. She has been doing great since she came home and has not had any trouble relating to her condition.

 

Logan Charles Minch ~ ~October 26, 2007~November 2, 2007

 

It has taken me almost a year and a half to finally find the strength to write Logan’s story.  My husband and I were ecstatic to find out we were pregnant with our second child.  My first pregnancy was completely normal and uneventful.  We assumed the second pregnancy would be just as easy.  Our first child was a year and a half, and she was a picture of health.  We went for our routine ultrasound at 19 weeks.  The tech. was very quite during the test, but did not seem to be concerned.  We found out we were having a boy, and were very excited to have one of each.  Within a half hour, our doctor called.  We were not home; therefore, missed the call.  The next day he called us.  We were prepared for bad news since he had called so quickly the day of the ultrasound.  He told us that our son had a rare condition called diaphragmatic hernia.  He referred us to Magee Women’s Hospital for further testing and genetic counseling.  On June 21st our fears were confirmed.  Logan had a 50/50 chance of survival since his stomach; all of his bowel, and part of his liver were in his chest.  We decided we were going to give him every shot possible.  After months of tests and consultations, Logan was born on October 26, 2007.  (2 weeks early.)  The NICU staff at Magee immediately resuscitated him.  I remember the neonatologist gave me a “thumbs up” shortly after his birth.  They quickly took him to the NICU to stabilize him before transferring him to Children’s Hospital.  I had to stay at Magee, but my husband went with Logan.  During the night, Logan had to be put on an oscillating machine, because he was not receiving enough oxygen on the ventilator.  Logan’s first few days were great.  He was doing well, and the doctors were optimistic about his prognosis.  His surgery was scheduled three days after his birth.  That Monday his levels did not look as good as they had been.  Surgery canceled.  Each day things slowly started to get worse.  Surgery was postponed Monday, Tuesday, Wednesday, and Thursday.  Finally, on Friday, Nov. 2, the doctors decided it was a now or never case.  They felt Logan was as stable as he would be for the surgery.  I kissed Logan on the head and went to the waiting room to start the wait.  After several hours, the head surgeon came out and explained that the actual surgery was a success; however, Logan was not rebounding as expected.  His left lung was the size of a grape, and his oxygen levels were extremely low.  We were asked to sign permission for him to be placed on ECMO.  Deep down I knew we were losing our son.  My husband kept telling me to not give up on him.  I guess it was a mother’s instinct.  The next thing I heard was the intercom paging a social worker to the NICU stat.  I knew it was for us.  She arrived and took us to a separate room where the surgeons came to meet us.  As Logan was being placed on ECMO he began to hemorrhage out of his right lung.  They were unable to save him.  We held our precious angel for the first time (tube free) shortly after his passing.  He was perfect on the outside.  I relive that day every day.  I pray to God that he is happy and healthy in heaven.  A year and one month after Logan passed, we welcomed a healthy baby girl.  Our girls will have a guardian angel watching them always.  I know Logan would have had so many problems.  He is now pain free in heaven. 

To add your story, please e-mail Kate at kcrawford@cherubs-cdh.org! If you e-mailed me your story and it was not posted – I had an issue with my e-mail account and some stories were lost. I do apologize and wish that you would please e-mail me back!

2 Responses to "Member Stories"

Is there only one member story so far? I think that this is a good thing. Narrowing down our cherub community by state. Thank you for taking the time to do such a wonderful thing. I had my son James Thomas “J.T” on June 26th of this year and sadly he passed on July 16th, 2008. Let me say that it was the best and the worst 20 days of my life. Please keep me updated on any new things going on. I am from the Altoona area of PA. Again thanks for doing such a good thing.

Kylene

You are so very welcome Kylene! I will keep you updated and look forward to hopefully seeing you at the get together!

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  • pacherubs: Would love to see you guys there is you can Kels!!
  • Kelsey: I hope that our family can come, but it is kind of a long drive. We are moving to Ohio in July, so maybe we will have to plan a trip to Ohio that week
  • pacherubs: You are so very welcome Kylene! I will keep you updated and look forward to hopefully seeing you at the get together!

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