A LETTER TO KIMI

Kimi,

Has she known throughout Pregnancy that her little girl would have Heterotaxy…Does she know if it’s Asplenia (no spleens) or Polysplenia (many spleens)? Does she have any situs inverses? Is the baby being transferred to a children’s hospital? Are they going to be running any tests while she is in the hospital? Your sister must have so many questions and concerns.

I belong to a wonderful support group and there are parents who have children with Heterotaxy. I only found out in January 08. But, I know for a fact there are parents who have known from the start. I would start there and ask parents what are things she should look for. Heterotaxy is so complex and no 2 children are alike. Babies born with Heterotaxy may have other problems they need to worry about. It’s up to the baby’s doctor to find out what other syndromes they may have. Knowledge is the best tool. Make sure that the baby’s doctor has a clue what Heterotaxy is.

Support Group: http://health.groups.yahoo.com/group/asplenia_ivemarks_syndrome/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1

Syndromes: Kartagener Syndrome, Congetial Heart Disease, Cardiac Abnormalities, Biliary Atresia, Intestinal Malrotation, Volvous, Gastrointestinal Abnormalities, Vascular Abnormalities, Functional Asplenia, Genitourinary Abnormalities, Abdominal Situs Inversus, Polysplenia, and Asplenia

The best thing you could do for your sister is just to be there. She will need a shoulder to lean on. You’ll need to support her and help her out. Just listen to her when she needs to talk. Help her with cooking meals and taking her other 2 kids to give her a break. Wash her clothes if she can’t. You are her sister and you know her best. Be there for her.

I will be thinking of all of you.

Kimi said...
You don't know me. My name is Kimberly Erickson. My sister is in the hospital right now having her 3rd baby. She was told by her doctors her little girl would have Heterotaxy. She is so scared, so am I for her. I've tried to find info on the internet and I can't find anything. I dont know what this is, or how it will effect her little girl. If you could please give me some answers on what to expect and how I can help her. Thanks

November 7, 2008 5:11 PM