About Logan

Logan was born June 8, 2010 with a very rare and very complex congenital heart disease called Heterotaxy Syndrome.    We knew at 18 weeks in utero that something wasn’t right.  After 3 excruciatingly long weeks and several misdiagnosis from perinatologists (high risk OB) we got a definitive diagnosis from Dr. Patel at Akron Children’s Hospital here in Ohio.  Logan as half a heart.  A normal heart has 4 chambers and for all intents-and-purposes Logan has only 2.  His body only created the right ventricle and the right atriumvery early on in utero.  His complete diagnosis is the following…

  • Heterotaxy Syndrome/Right Isomerism 
  • Levocardia/Situs Solitus
  • Double Outlet Right Ventricle-DORV
  • Complete Atrioventricular Septal Defect-CAVC
  • D. Transposed Great Arteries-DTGA
  • Pulmonary Stenosis
  • Supracardiac Total Anomulous Pulmonary Venous Return-non obstructed to right SVC – TAPVR
  • Bilateral Superior Vena Cavas
  • Absent Spleen -Asplenia
  • Midline Liver
  • Malrotated Intestines

We have since found (months later) that getting this complete diagnosis in utero in very uncommon.  We got very lucky to have such a great cardiologist fall into our laps and I have never been so thankful for anything in my life.  Having this complete diagnosis really helped us prepare and understand our son’s condition for months before he was born.  Many parents do not get this luxury as many cardiologists are not able to make this full diagnosis in utero.  I have told him this a thousand times but would just like to state it here one more time that we are ever thankful to our outstanding pediatric cardiologist Dr. C.R. Patel.  I truly believe that having a prenatal diagnosis helped prepare not only us but also the doctors.  I cannot thank this man enough for being so outstanding in his practice. 

Logan was born at Akron Children’s hospital in Ohio, on a sunny day in June, via C-section.  He weighed 6 lbs 4 oz.  He spent the first 2 weeks of his life in the NICU.  After that we took him home to try to get him as big and strong as we could before his first Open Heart Surgery.  At about 4 months old Dr. Patel told us that Logan would not be able to wait for his scheduled OHS and that he would have to have it early because of problems with his one atrioventricular valve not functioning well.  Within less then one week of finding this out we made our way to Boston Children’s Hospital where he underwent a Valve Repair, a Pulmonary Vein repair (TAPVR repair), and a Bi-Directional Glenn Shunt.  We were told this was about as complex of a surgery that can be done on a baby, and that children with Heterotaxy are the ones with the highest mortality rate.  He surprised everyone and did outstanding right out of surgery.  We had a few set backs later in recovery and Logan spent a total of 4 weeks in the ICU.  Logan is home now growing and getting stronger since his repair and we are awaiting his next Open Heart Surgery which will be in the fall of ’11, when he will have a surgery called the Fontan.

30 thoughts on “About Logan”

  1. I am sitting here in tears for YOU, for I know your pain/love for that child. I too went thru what you did but at 8wks preg. I was told that my baby would not survive the trimester. What a shock. But we believe in God and after I had a nasty fight with him (and lost by the way) I decided to have faith. Megan Rose Saunders was born 6/9/05 without the 10 diagnoses they told us she was supposed to have. She does have Heterotaxy,Asplenia, situs inversus, L-SVC,PDA & other dx that escape me right now. She had surgery at 9hrs old to fix a duadenal atresia and I am having problems now at 6yrs old with strange pains in her leg & other odd things. But she is here!!! (& naughty)

    SO,being a few years on the other side of surgery and NICU’S I say to you… hold that logan of yours. Soak up every smile,rub your cheek on his head,smell that baby smell,count fingers/toes,rock and sing to him. Cause that’s your job right now as mom. Leave the fixing him to the Drs./nurses.(ignore those machines)& leave the worrying to the Higher power. He’s better at it anyway (he knows what’s gonna happen)
    I hope I didn’t offend you. I don’t know where your beliefs lie but I only wanted to encourage you that you are not alone.

    1. Hello my name is Edward. I just recently lost my six day old little girl to heterotaxy syndrome. I wasn’t the disease that killed my child but more of the lack of effort on the part of the hospital. My child was a beautiful child weighing 6pounds 2 ounces at birth. A true gift from the heavens only to be taken from me because the nurse in the Labor and Delivery section. We warned the nurses on duty that our child was not eating at all and they still did nothing. There solution to this problem as to play with her chin to force her to eat but to no avail. My daughter look as if she was dying since the day she was born and am still hung up on the fact that I could not help her. Its hurts so much that a multi-million dollar corporation could not and did not attempt to help my child when we made it know to their staff. I believe that no matter what kind of insurance you have all babies and parents have the right for devine care regardless of economical status. It just seem as if instead of being a team of helpers and healers this particular hospital is only about wallets and check books. To those reading just look for the signs of this syndrome and be relentless with these medical practitioners because apparently the effort may not be put forth. If you have any question feel free to email me at edlemjr84@centurylink.net. God Bless you all.

  2. My son, Jed, has Heterotaxy and dextrocardia along with malrotation of his intestines. He was diagnosed intrauterine when I was about 12 weeks pregnant. My family and I were just devastated but we kept our faith in HIM, our Creator. I don’t know what your faith and beliefs are but as for me and my family, Jed’s diagnoses turned out to be a blessing for the family and the people around us. He may not have a perfect heart but he turned out to be the most amazing miracle in our lives in so many wonderful ways I could not imagine without. He has a pacemaker since he was about three months old when the doctors have to perform an open heart surgery emergently to save him. Apart from his pacemaker, his heart is not conducive for survival. Jed had his gastric surgery (Ladd’s procedure) when he was a little over a year old. I am a medical worker by profession so I know most of the things related to my son’s health/care but I don’t always have the answer to my questions. It always comes down to me being first a mother, then a medical professional second. Everyday, our son is a miracle in progress. He is now six years old (going on seven this July) and is generally healthy and in best shape as he can be!!! I would be looking forward for your future posts about Logan’s progress. May you and your family remain strong for Logan.

  3. I think your website is amazing! My son Luca was born with heterotaxy on January 8, 2007. We were at Boston Children’s Hospital as well. Tragically, Luca died at 2 months a 1 day old. I think of him everyday and cherish the time we had together. I remember feeling like no one understood what it was like to have a been with heterotaxy. Your website creates a community for other families. Your tips onfeeding and weight gain are great. Keep up the great work!

    1. Marie -I am so sorry about Luca. This is just a terrible disease and babies like Luca are why we need to fight for research and education for our babies. Please keep in touch. I am working on a Memorial page on the Heterotaxy Network site. http://www.theheterotaxynetwork.com If you would like Luca to be part of it please let me know. Again I am very sorry for your loss. Which type of heterotaxy did Luca have? Did he have Right Isomerism/asplenia type? X Kristen

      1. Kristen,
        I would be honored if Luca could be a part of your page. He has right isomerism, asplenia, malrotated intestines, AV cushing defect, pulmonary atresia, TAPVR, and double outlet right ventricle. He was a brave and beautiful little boy with a spirit bigger than his list of diagnoses. I miss him everyday! Four years later I am still looking for information, for new data, and that is how I came across your website. It is so frustrating that there are no answers for us. I am passionate about supporting research! Please let me know what I can do to help your efforts.
        Marie

      2. Hi Kristen, I am not a blogger but my neighbor has asked me to write. She is a cardiac nurse(for adults not congenital) and thought I should write. I am a 46 year old woman soon to be 47. I have heterotaxy with polysplenia. I have an interrupted IVC, agenisis of the pancreas, malrotated intestines(never fixed) mid line liver, pulmonary stenosis, many arrythmias and 2 lead pacemaker other things as well. I was first cathed in 1975 by Dr stella Van prag(not sure of spelling) at BCH.I now see a few EP specialists and congenital specialist at MGH. I have been in contact with a DR. Patel because of your blog. Apparently I do not look so good on paper but in person you would never believe I have a heart condition. I am finding out every form is slightly different but many take the same course. I am not sure why I am one of the lucky ones but I do believe in hope beyond medicine. I have prooved ALL my doctors wrong.My story is long but I can assure you there is hope.. I have left my information below if you want to contact me about anything. Some people ask if there is anyone alive after adolescence. I am living proof. I have 2 daughters ages 14 and16. The doctors watch them for arrythmias. Dr. Patel spoke to me over the phone. He is very knowledgable on heterotaxy and very kind. If there is anything I can do to help other families please let me know. I am very grateful for my life and do not mind sharing or helping others living with heterotaxy. Mary Beth.

        1. Hi My name is Suzette Ohai, My sister is 6 months pregnant and the baby is diagnosed with hetrotaxy, ventricular septal defect and heart block, if you do not mind please call me at 267-574-4373 and if no answer leave a message, the baby girl name Jahanna is due Sept 20, 13 please if you can help and share some positive information we will greatly appreciate it, she has left Dr. Patel a message he did return it but she missed the call but will call back, we are praying and believing that all will be ok and trusting God, if you can share any info with us we would greatly appreciate it.

  4. What a beautiful little boy you have. My son Blake was born with Heterotaxy, dextocardia, no spleen, and several heart defects. I was blessed to have two wonderful years with him. I’ve learned so much since he passed. And I’ve learned that so many babies do great and others don’t.

    1. My daughter was born similar to your son Annaleah was born April 24th 2012 with heterotaxy syndrome no spleen and several heart defects she was 4 weeks early I lost her at 4 days old and miss her so much.

    2. My son, Max, passed away in May 2010 at four years old from complex heterotaxy syndrome.He was a beautiful child, such a blessing. It was a hard and difficult ride. He would never eat by mouth and was on around the clock meds. I am remarried and pregnant with my second child, a little girl. The perinatologist says everything looks good. We continue to pray. I wish and pray all of the best for your miracle babies. I pray only continued life and peace for all of these children and their families. Much love and blessings. Jenni E.

      1. Sorry, to reply so late, I am so very sorry for your loss. On Facebook a fellow Heterotaxy Mother started a group for Bereaved Parents of Heterotaxy Children. I hope that you can reach out it is a small very private goup. ~Kristen

  5. Im 6 months pregnant and I just found out that my son has heterotaxy, along with a single ventricle, transposed great artery, small pulmonary artery and problems with ductual dependancy. Im extremely nervouse of the months to come…

  6. I’m so glad i’ve found this page, ur little boy is just gorgeous. I’m a mum of 2 Reiley a healthy 2 year old, and Evie who is 7 weeks, evie came into the world weight a fantastic 8lb 13oz, I thought i was having a healthy baby girl as thats what i had been told in all my scans, but everything changed when she was taken away about an hour after she was born as she was very blue, her sats was checked and they were in high 70’s, as the day went on she had all sorts of tests and scans, but our local hospital thought it was best to transfer her to yorkhill sick kids hospital in glasgow, where there is a team of cardiologists, once we got there and they done a few echo’s they had a full picture within 12 hours, Evie has right isomerism, supercardic location of TAPVR to the right svc , AVSD with DORV, normally related great arteries, sub-pulmonary stenosis, 2 right lungs, midline liver, asplenia & abnormal GI rotation. Evie spent the first 4 & a half week in hospital so they could see what was going on with the heart, and decide whether she would need surgery soon or if we could come home for a month or two, but luckily the cardiologists decided she didnt need surgery right now and have let us take evie home, until our next appointment on the 2nd of may, we wont know when they plan to do her first open heart surgery. It’s been a rollercoaster over the last 7 weeks but i feel blessed that she has came this far, she is my little miracle and i just pray she keeps her fighting spirit.

  7. Thank you so much for your story my lil girl lola will be born with the same thing you helped me know what im in for I hope your baby boy is doing great and he will be in my prays tonite when I pray for my girl lola i’ve been very scared about losing her and hear about logan helped again thank you for your story and god bless your family

  8. My wife is 21 week pregnant with our first child who has been diagnosed with heterotaxy , he has stomach on the right side with heart on the left , his heart they say has no major defects but IVC might be interrupted. i Have complete faith in our creator owner and master of the heavens and the earth and everything in between i pray to him everyday to give my son a long and healthy life Amen.This website is amazing any feedback would be much appreciated we live Toronto,Ontraio,

    1. My beautiful 21 year old daughter was diagnosed incidentally with heterotaxy syndrome with polysplenia on December 26, 2012. She has been totally asymptomatic all her life and very healthy. She does a rigid workout daily for 2 hours and will be a senior nursing student this fall. She is our third child out of four children. None of our other three children have heterotaxy. She has seen a multitude of specialist since her diagnosis. Our last specialist will be with a geneticist this Thursday. Although her future is unknown, I do realize how blessed we have been. My heart and prayers go out to all these children and their parents. Miracles do happen.

      1. Hello Paula, My 19 year old daughter was recently diagnosed with heterotaxy polyslenia. We had no idea she had this till about 4 months ago. I have been looking for a doctor or clinic/hospital anywhere in the USA that will provide the best knowledge and care of an adult patient with heterotaxy. I have had no luck over the internet. Any information would be helpful. I hope to hear from anyone. BTW, my daughter and I are following the Heterotaxy Network on Facebook. My daughter Morgan Read would love to connect with some adults with heterotaxy, on Facebook. Thank you so much.
        Jennifer Angelucci-Medina, in Washington state.

  9. Hello all, this is a great website for parents who are destinied to have babies with heterotaxy. I am a 26 year mother of two babies with heterotaxy: the first was a girl who passed away when she was 4 weeks old, the second was a boy who died when I was 20 weeks pregnant. I am as devastated as you can imagine and dying to be a mother of a healthy child. We’re still waiting for post-mortem results to see if they have an explanation for what went wrong. I am really scared of trying again for a baby as the recurrence risk is higher now that we have two repeated case. Does anyone have healthy babies after a baby born with heterotaxy? I pray to the Lord to give us healthy babies. Amen.

    1. Hello, yes, there are many families that go on to have healthy children after having a heterotaxy child. There are some rare reports of families though that do continue to have one heterotaxy child after another. Please look up The Heterotaxy Network on Facebook. There is a tremendous group of families on there that can with you information. We can also share with you information to the leading heterotaxy geneticists as well. ~Kristen

  10. Hello, I am new to this. I am currently pregant with my first baby that has heterotaxy syndrome. I first found out back in February about the babys heart rate being low and I had to go Halifax here in Nova Scotia to the childrens hospital in March and found out about the heterotaxy syndrome. It is very scarey for me and my fiance because i had never heard of this before n its my first so i dont really know what to expect.

  11. Hello, I am new to this. I am currently pregant with my first baby that has heterotaxy syndrome. I first found out back in February about the babys heart rate being low and I had to go Halifax here in Nova Scotia to the childrens hospital in March and found out about the heterotaxy syndrome. It is very scarey for me and my fiance because i had never heard of this before n its my first so i dont really know what to expect

  12. My son has right atrial isomerism or (heterotaxy) as well. He had the Glenn done at 6 months old and now we are just awaiting the Fontan. Good luck to your boy, as well as your famly!! These babies are much strong than led on to be. GOD BLESS

  13. My heart and prayers go out to your family. my son Xavier was also born on June 8th but in 2005 he is now 8 years strong he has Heterotaxy with no spleen. he got his first surgery at 6 days old and 3 more just about every year and a half. I know exactly what your going through. All i can tell you is to stay strong for your child and give them the world.

  14. Hi – my daughter was born with almost the same condition 25 years ago and is alive and well in south africa – let me know if we can help in any way with any information

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