My Name is Kristen and I am currently 35 weeks pregnant with a little baby boy diagnosed with Heterotaxy. I have decided to document this journey as a way of reaching out to others facing a CHD (Congenital Heart Diease) diagnosis. I will try to be brutally honest about the good, bad, and the ugly. If any of our experiences helps one family it would make this whole blog worth while.
A little background about myself. I am 30 years old and married to my best friend Scott for 5 years. We have one son together named Ethan and he is 1.5 years old right now. I also have two step daughters named Sarah (18) and Stephanie (13). We live in Ohio close to Cleveland. I am very lucky to be living where we are, we are 25 mn. from the Cleveland Clinic and Rainbow Babies Hospital, and Akron Children’s Hospital which are all wonderful Children’s hospitals. I just read in some magazine that the state of Ohio has the so many great Hospitals including great ones in Cincinnati and Columbus that it is the best state to be born in with serious medical conditions.
We had a series of fortunate events occur along with this devastating news. One being that, one of the leading experts on Heterotaxy is at Akron Children’s Hospital which is a 20 minute drive from our house. Dr. Patel is the one that diagonsed the condition and from what I understand a lot of children with Heterotaxy don’t get diagnosed in utero because it is a very hard diagnosis to make. The other fortunate event that has been a huge benefit in our life is that my parents relocated from Wisconson to 10 minutes from us just a couple of weeks before we got the diagnosis.
Hi Kristen,
You probably don’t remember me, I’m a second cousin (or something)! My mom and your mom are 1st cousins (Lori Sletten). I just wanted to let you know that I stumbled across your blog somehow, and your story touches a special place in my heart. My son Jakob, now 11 years old, was diagnosed at 7 weeks old with a congenital heart condition called Long QT Syndrome. He has gone into sudden cardiac arrest 3 or 4 times in his life. When he was 5, he coded in the ER and the docs decided to put an implantable cardiac defibrillator in him. He leads a pretty normal life now, but there is always the knowledge that he is at risk for sudden cardiac arrest. I worry everyday about him =) You can find Jakob’s story at our blog
http://jennikostecki.blogspot.com/2009/04/ive-got-heart-rhythms-on-my-mind.html
Thinking of you and wishing you guys the best.
Jenni
Hi Kristin,
I found your website while searching on the internet. My son, Keegan, was born with Heterotaxy Syndrome along with many other cardiac related issues, including sililar ones to your son, Logan. He was at Cincinnati Children’s Hospital and I would agree that they are one of the best when it comes to this syndrome as well as CHD. I wish you all the best as this is a very exhausting and tough thing to be dealing with.
Best Regards,
Bruce Southers
Hi Kristen,
This is the first time I have seen your posts. I have often thought about you and wondered how you were doing, but never got around to contacting you.
My thoughts and prayers are with you all!
Hey Cynthia! It is so good to hear from you. I was just thinking about you as well. Scott was just saying we needed some new pans too! Keep in touch!
Hi Kristen,
Wow, is all i can say!
Our baby has a cystic hygroma and upon the discovery of this, the doctors have found our baby – in utero (18 weeks)has a heart defect – or several defects – and the stomach is one the wrong side, they cannot see find the spleen or the bladder (the bladder they think is hiding). Anyway, they have yet to diagnose the baby with anything, but when i looked up all these symptoms- this came up. This is the only thing that came up. We see a cardiologist soon for an echocardiogram and we are in Ohio!! How great is that!! We wish your family the best. Thank you for showing us that there is hope.
If they were looking for the spleen they are thinking Heterotaxy. Wow. What part of Ohio are you in? We should talk for sure. Leave me your email address, I can definately give you a lof of info. Wishing you and your family the best also.
Ashtibula, Ohio
Did your little one have a cystic hygroma? one doctor saidthe stomach could just be in the wrong place because of the fluid around the heart pushing it over….but then the onewe saw two days ago said that was not the case, that the stomach is definatly on the wrong side and he did not see a spleen….and they have yet to see the bladder.
Dr. Patel is on my insurance and I see my regular OB on Tuesday and she makes the referral to the cardiologist, so I am going to “demand” that it is him. right now all they see with the heart is a hole between the left and right ventrical and this past doctor said that the left and right side of the hearts were not “electrically” connecting – not sure what he meant by that – and he mumbled alot. Ever heard of that??
If you give me your name and number I can have Dr. Patel just give you a call. He is very nice that way. You can email me privately if you would like. Kristenspyker@yahoo.com
We should definately talk.
our son thomas was born 35 weeks early with polysplenia,hetereotaxia, he had 3 bowel obstructions, had his first surgery when he was 15 hours old. His second he was 5 days old and spent his first month of life in the hospital.Thomas had to be on elecare formula , it was 80.00 a can Insurance denied the claim..said we would have to put a feeding tube in him first..then they would pay for it..even though they new he did not need a feeding tube. So 9000.00 later which we paid for with no help…after his first year, he thrived and has done well. We feel very blessed and even though it was rough it was so worth it! At the time Our oldest was2 and our middle child had just turned 1, so it was stressful, but when we look back, we truly feel blessed
Thomas will be 10 years old in May. Breaks my heart to see families go through so much.
Hi Kristen
Your website is a blessing for so many. Our son Christopher is 6 years old. He was diagnosed w/ left atrial isomerism, polysplenia, situs inversus, midline liver and malrotation when he was about 34 weeks in utero. He had surgery when he was about 3 weeks old for malrotation and Ladds bands, not to mention what seems like a million different tests. I am actually a cardiology nurse and I work with really top notch cardiologists here in Florida ( phenominal training), and none of them had heard of the condition ( including the ones trained in Cleveland Clinic and Harvard) I am always the one explaining what Christopher has to any physician he meets. Christopher was on prophalactic antibiotics for the first year of his life because they didn’t feel that he had a working spleen. After a heat damaged red blood cell nuclear scan, they reluctantly decided he did have functioning spleen nodules and took him off of his Amoxicillin. As someone else mentioned, you would never know by looking at him how complex he is from a medical standpoint. Our cardiologist explained to us that Christopher will more than likely need a pacemaker at some point, but that there is no way to determine when that will be if ever. I look forward to participating in your website to educate others! Thanks so much for what you do!