Comments on: One mother’s story: Pentalogy of Cantrell

By: tranquilladunlap

tranquilladunlap — Fri, 19 Mar 2010 01:40:19 +0000

congrats sarah my son (Kenton Dunlap) was also born with pentalogy of cantrell on june 2 1998 at utmb in galveston, texas to them he was a ginny pig and the only known suvior then his omphalocele consisted of his liver on the outside of his body, his intestines wrapped around his lungs thru the diaphragmatic hernia, he has anarterial septic defect sterum missin the xphiod process which u can c his heart beatn, plmonary hypertensio, heart mumor, he was plaed on ecmo along with the vent at birth and had 13 surgeries at 9 days old he was on vent trache and oxygen until the age 5 still he has not had hart surgery they say he is not strong enough but no at age 11 besides havn no belly button and al the scaes you couldnt tell there was anything ever wrong. so stay strong and keep up the good work. Tranquilla Dunlap of clute, texas

By: Darick

Darick — Fri, 08 Jan 2010 16:53:47 +0000

Please read our blog if you have a Pentology of Cantrell diagnosis! My wife and I were diagnosed with Gastroschesis which was later determined to be Omphalocele. I am an attorney and she is a physical therpist. We read everything we could get our hands on. I would ask every Dr. we saw prior to our daughters birth about the risk of Pentology of Cantrell. All looked at me like I was stupid and assured me that we did not have that condition! Guess what? Her omphalocele was repaired in 24 hours and then 3 days later her intestines pushed through a hole in her diaphram and caused he to have difficulty breathing… so she had to be opened up again to repair the diaphram which is when they discovered the abnormal chest issues… One thing we did not know is that Pentalogy is a spectrum disorder. There are severe cases and minor cases.. we were lucky and had a VERY minor case. Also, girls are protected by their genes more than boys… Please read our blog http://www.baytasbattles.blogspot.com, or contact us if you have any questions about this condition. It can be devestating, but it can also be very survivable… and guess what? A lot of DR have never seen it so you have to be your own advocate! It is so rare that we are particpating in a micro array study to help isolate the genes responsible for the condition. The Genetisist at our hospital had only seen 3 cases in his entire career and he specialized in these types of disorders!

By: Jeff, Trish, Sam and Rori

Jeff, Trish, Sam and Rori — Wed, 06 Jan 2010 00:08:59 +0000

What an unbelievable story..I've known Mike for about 20 years and when my daughter was diagnosed with an omphalocele he directed my wife and I straight to Dr. Jennings and his team and we are forever grateful. Aidan, Sarah and Mike's story is truly inspirational!!!

Jeff & Trisha Bernheart

By: melissa carter

melissa carter — Tue, 15 Dec 2009 19:36:58 +0000

My son just turned 14 the 12th of December. When he was born I found out then that he had a birth defect. I was sent to a room and he was wheeled off to the nicu. Then the NICU from Jackson MS came to pick him up when he was only 5 hours old. I was terrfied. Never heard of anything like this before. They said they would be doing surgery and couldn’t tell me anything else. I turned to GOD with a desperate plea to save my son. He was a blessing. He did have surgery when he was 6 weeks old and heart cath at 6 months and open heart surgery at 8 months. That was the last surgery. I have left it all up to my Lord and Savior Jesus Christ. Thanks to him my son survived. Still doing great has a check up 1 time a year and growing great. Surviving Pentalogy of Cantrell

By: cherie cawdron

cherie cawdron — Sat, 05 Dec 2009 12:47:45 +0000

I can’t believe I have found this link, info. I have been so isolated about my son’s condition for SOOOOOOOOOOO long. Mitchell (who has Pentalogy of Cantrell) turns 6 next week. We spent a long 2 years in hospital before coming home. I have read your story and just identified with so much. We are a small group of parents with unique children and I would love to share. Will try and join the group. Mitch still has a trache and I belong to an online trache group, originally was part of the MOOs (Mothers of Omphaloceles), but I have always longed for other parents who really knew about our kids conditions. So anyway, going to join in!
Cherie XX

By: Sarah Doyle

Sarah Doyle — Fri, 04 Dec 2009 22:32:48 +0000

Thank you all for your wonderful responses. I wanted to make myself available to anyone who needed further advice or support. If you would like to contact me personally, you can reach me at sabelle0303@yahoo.com. I also recently began an online support group for Pentalogy of Cantrell, the link to that is http://health.groups.yahoo.com/group/PentalogyofCantrell/. There are only a handful of members, but those of us on there are always happy to help others who are going through a similar situation.
Thanks again!
~Sarah Doyle
Aidan’s proud mommy

By: Dorah Ruth Atieno

Dorah Ruth Atieno — Thu, 26 Nov 2009 19:13:25 +0000

Back in Sudan a hospital by the name Mother of mercy mission referral hosp for the first time since the hosp began two years almost received a 12hrs old baby who had omphalocele. Due to the war that has been ,not so very many hospital are and to make it worse the personnel and manpower I so mean the machines that can enable the detection at an earlier stage.The people too are not educated neither do they know of such existence!After reading through your story sahre I so believ and trust in God that the missionary American Physician and a surgeon will help and try make the innocent baby survives.

God bless you, Aidan , and your family!

By: Evelyn

Evelyn — Thu, 26 Nov 2009 18:32:16 +0000

Holy crap! we were there the same time you were and Dr.J wanted to know if we wanted to meet you guys,we declined obviously,because we really didnt think there was much you could have done for us. Reading his story is almost like reading our own. Our daughter Sonora was born in Oct. and she stayed at childrens for about a yr,0 surgeries,she is 2 now and I dont quite understand how they overcame aidens and nothing for her,I will ask him,but if you have any suggestions on what to or not to do that would be great,as far as the surgeries go,I dont know if its even possible now since he had it all done by one and my daughter is already 2,but if you got anything,Id appreciate it
thanks and good luck with you guys!

By: Tara

Tara — Fri, 25 Sep 2009 12:40:16 +0000

Sarah, thank you so much for your inspiring story. I am 11 wks along, and we were just told that our baby has Pentalogy of Cantrell. I’m dying inside. Almost every doctor I’ve talked to keeps telling me to terminate now. I recently got in touch w/ The Children’s Hospital of Pennsylvania to see if there’s anything they can do. We have been told that our baby seems to have about 4 of the 5 markers, so I’m really not sure. It’s so good to hear hope that your son survived. It makes me want to keep going and believe my child can be a survior, too. Thank you so much for sharing. Please contact me with any additional information you can if you are able at Tara_spahr@hotmail.com. God bless you, Aidan, and your family. I pray that he continues to progress and turn into a fine young man. Thank you again for sharing your story. You’ve given hope to others when hope was lost.

By: Elizabeth Shaw

Elizabeth Shaw — Wed, 16 Sep 2009 01:48:23 +0000

I search the internet almost everyday for new information about pentalogy of Cantrell. Our baby has been diagnosed with this and he will be born in October. Your families story gives me hope of what we may be facing if we are lucky. Good luck to you and your family, you are inspiring.