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When Hearts Conjoin

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When Erin Marie Herrin found out she was carrying conjoined twins, she was told that most die within 48 hours, and the prospect for a long life was next to nothing. Well, seven years later, not only are the twins thriving, they separated and are getting ready to walk on their own for the first time.

when haearts conjoin bookcover

When Kendra and Maliyah were born in 2002, they were joined at the pelvis and the abdomen. They had two legs and each girl controlled one, and they also shared a large intestine and a liver. It was a huge risk to have them separated, but it's one that their parents decided to take.

The twins' mother, Erin, sat down with momlogic to talk about her daughters and their journey from separation to walking on their own.

momlogic: What was your reaction when you found out you were having conjoined twins?
Erin Marie Herrin: We found out about 18 weeks into the pregnancy that I was having conjoined twins. We had a couple of weeks to decide what we wanted to do. As you can imagine, that was extremely stressful, but we made the best choice possible for me, my family, and also for Kendra and Maliyah -- we decided that it was our responsibility as parents to give birth to Kendra and Maliyah. We knew that it wasn't going to be easy, but we knew that we could handle it. At the time, Jake and I were separated and things weren't going well in our relationship, but as time went on, Kendra and Maliyah began pulling us together, making us work hard as a team, and helping us to overcome some of the difficulties in our relationship. So they were a great blessing for that purpose.

momlogic: What was their birth like?
Erin: Kendra and Maliyah were born on February 26th, 2002, by vertical C-section. Several weeks before they were born, at 26 weeks, I started hemorrhaging and my water broke, but thankfully I was able to hold on until 32 weeks. I was bleeding and had numerous complications, so I was in the hospital on bed rest. That first night in the hospital after they were born was pretty excruciating -- I cried all night long. I almost felt like I had failed at being able to be a safe place for the babies to grow, survive, and thrive. It was a double-edged sword though because I was relieved to be done with being pregnant, but I was sad about them having to go to the NICU and having to have all the tubes and the ventilators and not knowing what was going to happen to them.

momlogic: What was it like seeing your conjoined daughters for the first time?

Erin: As they pulled Kendra and Maliyah out, they held them through a window and I can faintly remember hearing one of them cry. Then they were whisked away -- that was pretty much the first time I saw my babies. Before actually seeing them, I had done research on conjoined twins, and people tried to explain how they were going to look, but to see your own babies like that, it made it real -- before, it wasn't as real. I wasn't able to see the babies for the first 24 hours and that was very difficult.

momlogic: How was Kendra and Maliyah's health after they were born?
Erin: It was touch and go for such a long time, even after they were born. Each day, and in the week that followed, there was a lot of bad news. Our girls were conjoined at the chest and pelvis, and when they were first born, the doctors didn't really give us much hope. It was really touch and go, and they couldn't really give us a future outlook. The girls shared one kidney, and conjoined twins who have had that in the past have died within a few weeks of birth, or they've been surgically separated and one or both of the babies have died. It was a pretty scary situation.

momlogic: When did you decide to separate Kendra and Maliyah?
Erin: After about four years of wondering if they were ever going to be separated and always being asked about it, we decided to do it. They had their first surgery to separate them on June 23, 2006. During that first surgery, they put balloons underneath the skin to stretch over the large gaping holes in their abdomens and chests. On August 6th, 2006, after a 26-hour surgery, they were successfully separated. The 26 hours during that surgery were the most difficult 26 hours of my life.

momlogic: How did Kendra and Maliyah cope after the separation surgery?
Erin: After the girls were separated, we spent about 86 days in the hospital. The recovery from their surgery was about a year, and during that time, the girls had several other surgeries. During that first year, Maliyah was on dialysis for 9 months, and she was in excruciating pain. Her things would burn, and she had really bad cramping, and I always, always worried about her dialysis catheter getting infected.

momlogic: As a mother, how difficult was the decision to separate them? And how did you handle it emotionally?
Erin: As a mother, it was a very difficult decision to separate the girls. We'd become accustomed to Kendra and Maliyah being together all the time and being conjoined twins -- that's who they were and all they knew their entire lives. We talked to the girls about it and made the decision to separate them.

momlogic: After the girls were separated, what were the milestones as individual toddlers that they achieved?
Erin: Some of the milestones that they've achieved are being able to use their walkers, their crutches, being able to go to school. It seems like, as time goes on, they're getting healthier, and it's interesting to see how they respond to things differently now, how their personalities are so different. Kendra is very outgoing and very social. Maliyah is very shy and really laid-back but very bossy, and it has just been interesting to see how they have evolved into being their own people and just the different ways that they get around even the house. From right when they were separated, they actually got around the same ways they did when they were conjoined. Maliyah would scoot around on her back, and Kendra would just scoot around on her bum. Now they both scoot around on their bums and just to see how they are, at seven years old, it's really amazing.

momlogic: Kendra and Maliyah are now being fitted for prosthetic legs so that they will be able to get around without walkers or help. Tell us about that.
Erin: Right now it's hard for me to know the exact process of getting fitted for a prosthetic. This is the first time we've had to really go through it. Right now, we've only had about two fittings for it. The first one is when they took casts of where the girls are missing their limb, and we're just going on their third fitting. I won't know really the process of that until we get in there. Sometimes I like to be in the dark about things.

momlogic: You have five children, another set of twins and a daughter. How do they all get along?
Erin: All five of my kids are really close in age. We had five kids in five years, so you can imagine it's a lot of fun. The kids all get along really, really well. They love playing together. Kendra is very social, the kids are very social, but, for the most part, they enjoy playing together, and they really enjoy playing with their friends. We live in a great community here. Their school is wonderful. They have a lot of good friends, so we've been really fortunate in that.

momlogic: How do you think having prosthetic legs will change the girls' lives?
Erin: Right after the girls receive their prosthetics, they'll be able to walk on them, but they'll need a lot of physical therapy. As it's starting to get into the summertime, they'll be in and out of physical therapy -- I'm sure we'll just be doing a lot of the physical therapy on our own as well. I know Kendra will probably take pretty well to it. Maliyah, I anticipate she won't. And so, she'll probably be a lot more work than Kendra will be. And so, we'll have to see how it goes. I know Kendra will probably be pretty excited to get her leg.

momlogic: You wrote a book about the girls called "When Hearts Conjoin" -- what made you want to write it?
Erin: A day after the girls were separated, I decided to write a book. I thought it would be such a wonderful thing to share with the girls what their family went through to separate them. And I thought it really was going to be a big part of making them understand how difficult it was for them and for us to be able to make these hard decisions. There were plenty of things that happened before the girls were actually able to be separated. So the day after their surgery, I knew that was something I wanted to do for them. When I was writing the book, it was very, very difficult to write because some of the emotions I had tried to suppress for so long came out in it, and the things I wish I never really remembered came back as well. So when we were sitting down to write it, it was so nice to get that stuff out and to just realize it's out there and I don't have to think about it anymore. And now all the children are doing so well, and trying to balance everything is amazing, and I have a wonderful husband that helps me all the time. We're a really good team. I'm starting to go back to school right now. There are some things I want to do for myself, and I think that it's important as a mother that we don't get too wrapped up in always caring for other people and letting ourselves kind of fall by the wayside. Life's a journey, and we always have to make sure that we're doing what we can to be happy.

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1 comments so far | Post a comment now
LuAnn Staheli July 6, 2009, 8:27 PM

Anyone interested in buying a copy of When Hearts Conjoin can do so online at: Proceeds from the sale of the book go into a medical trust fund for Kendra & Maliyah.

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