The Buckles Family

     

Jade Hope and Erin Faith Buckles were born on Thursday, February 26, 2004.  They are true miracles who have beaten the odds.  Conjoined from mid-chest to naval, the girls shared a pericardium (sac around the heart), diaphragm and liver.  Their hearts shared a small electrical connection and beat in synch.  Erin's heart was 60% in Jade's chest.  These beautiful babies were born to Marine Gunnery Sergeant (now Master Sergeant) Kevin Buckles and his wife Melissa.  They were also welcomed into this world by their brother, Kevin Jr., and sister, Taylor Joy.

Erin and Jade were successfully separated on Saturday, June 19, 2004.  They returned home on Friday, July 2, 2004, just 13 days after surgery.  We later learned that Erin suffered a stroke to her spinal cord that left her paralyzed from mid-chest down.  The damage occurred at the T3-T7 levels of her spinal cord.  The injury is considered incomplete, so we have great hope for at least some recovery.  Erin works extremely hard at therapy, both at home and at therapy centers, in order to regain as much function as she possibly can.  We are counting on the fact that, since these girls have defied the odds from the very beginning, Erin will show the world that she can overcome this obstacle as well.

We found out we were having conjoined twins on November 6, 2003.  I was 18 weeks pregnant, and we didn't even know we were having twins before that day.  The news was completely overwhelming.  Luckily for us we were referred to Dr. Macedonia, an excellent perinatologist at the National Naval Medical Center in Bethesda, MD, who was able to ease many of our fears.  Thanks to his knowledge and the 4-D ultrasound, we left his office that first day with quite a few questions answered.  I stopped working three weeks later, per doctor's orders.   Kevin's sister began calling the girls Faith and Hope, and the names, because they were beautiful and fitting, stuck.  We chose them as the middle names to go with the names we decided upon:  Erin and Jade.  Two days before Christmas we went in for an ultrasound, and the doctors discovered that the umbilical cord was around Erin's neck.  I was admitted to the hospital immediately and stayed there until the babies were delivered by C-section on  February 26, 2004.  The girls were delivered six weeks early due to the fact that their heart rates would drop after my contractions.  Because they shared one umbilical cord, there was a lot of fear that there was a high risk of a cord accident.  The C-section turned into an emergency situation when the girls' heart rates dropped dramatically as I was being prepped for the surgery.  Before the epidural had a chance to take effect, the girls were out.  The incision was made at 10:30 and Erin and Jade were born just one minute later at 10:31 a.m.  I felt everything, but that wasn't my concern at the time.  The girls came out much healthier than we had anticipated.  They stayed in the NICU for just one week;  most of that time was to help us figure out how to care for them.  We were all discharged on March 4, 2004. The separation surgery took place on Saturday, June 19th, 2004.  Because of the outstanding surgeons and medical teams, the surgery was over in just 6 hours and was a complete success!!!  Jade and Erin only spent 13 days in the hospital before returning home to complete their recovery here.  They were released from the hospital on July 2, 2004 -- a true independence day celebration!  Immediately after the surgery we had noticed that Erin wasn't moving her legs, but the doctors attributed it to possible pain in her abdomen, as babies initiate their kicks from that region.  As the girls continued to recover and Jade was kicking quite a bit, our concerns grew.  Erin was not moving her legs at all.  The physical therapist was very concerned as well.  She works with the girls three times per week to help them catch up on their development.  She could not figure out why Erin wasn't moving her legs either.  Erin finally had an MRI on her brain and spine in September, and it was discovered that she has a spinal cord injury.  Sometime during the surgery, Erin had a lack of blood flow to a section of her spinal cord (T3-T7), which caused permanent damage.  The surgeons have not been able to figure out when the injury occured, because it should have been evident in the blood pressure readings during surgery.  There is no indication of the "stroke" that caused the injury, but we know it did happen during that time because she kicked normally before the surgery.  Erin now visits many specialists to manage everything that goes along with spinal cord injuries.  She will eventually be fitted with different devices and braces to help her sit and stand, and she will need a special stroller and wheelchair.  We are heartbroken for her, but we also know what an absolute miracle and blessing it is to have them both in our lives.  

To find out more details of the time between their birth and their separation, check out the links to the articles from the Washington Post.  Those articles were very in-depth and well-written.  Just go to our Links page, and click on the dates of the articles you would like to read.  There is also a photo gallery of pictures of our family taken by Post photographer Carol Guzy, who has won 3 Pulitzers for her amazing work.

Our daughter, Taylor Joy, born in October of 2001, had surgery on her spinal cord just one year after her sisters' separation surgery.  It was discovered that she had a tumor on the lower part of her spinal cord, and it was tethering her cord.  The tumor was causing her to lose function in her bladder and right leg.  If we had opted not to do anything, Taylor would have been paralyzed from the waist down in a short amount of time.  The surgery itself posed an enormous risk, but we truly had no other choice.  We could sit back and await the inevitable or take a chance to give Taylor the possibility of walking in the future.  We took the chance.  Surgery was performed on July 15, 2005 at Children's National Medical Center in Washington D.C.  The neurosurgeon was able to untether her cord, but he was only able to remove about 60% of the tumor.  After the surgery, he told us that whatever function she had already lost would most likely not return.  He also said that there was a chance she could re-tether somewhere down the road, and we could be looking at more surgeries on her spinal cord.  Each return to the OR poses a much higher risk for Taylor and her spinal cord.  Taylor did fairly well for almost 1 1/2 years, but in March of 2007 she seemed to be going downhill.  After an MRI, her neurosurgeon told us that he believes her spinal cord is already re-tethered.  However, he would not perform another surgery until she significantly started to lose function.  In August of 2007, the time came where her loss of function was becoming alarming.  Taylor returned to the operating room for her second surgery on her spinal cord on September 11, 2007.  Immediately after surgery she lost all bowel and bladder function, and she wasn't able to walk.  There was great fear that she, too, would have to use a wheelchair.  In fact, she did have to use a wheelchair for a short time, until she regained some strength and the ability to walk.  Taylor has had some return of function to her bowel and bladder, but we do have to catheterize her every 3 hours.  She lost sensation in her right leg from the knee down.  And unfortunately, the journey is not over for Taylor.  There is a pretty high risk that she will re-tether again and will have to go through another surgery.  Her history has shown us that with each surgery, Taylor loses function from the waist down.  So, for now we have to watch her very carefully for signs of loss of function, most specifically in her bladder, bowel, and lower extremities.  It makes life a bit stressful, but we have learned to enjoy each day and celebrate life.  Taylor receives physical therapy once a week to try to strengthen her right leg and foot, and to try to regain some of what she has lost.

Jade Hope had another surgery in August of 2006 to reconstruct her chest wall.  She had a large bump on her chest where it had "deformed" from being conjoined with Erin.  The plastic surgeon thought it was the right time for the surgery.  It was a difficult day, because they were working right over her heart, and any pressure applied to the heart could cause serious complications.  A cardiac surgeon was on-hand in case they ran into any trouble.  After breaking three of her ribs, taking out a section of the ribcage where the bump was, removing one of her ribs and using it to cover the gap, and finally wiring everything back together, the plastic surgeon had done all he could for the time being.  Jade amazed us all in her recovery time yet again, and was ready to be discharged from the hospital just two days after the surgery.  I think I would have been down for two weeks following that one!  The bump is now smaller but still there.  We may choose to do another revision in the future, but for now we are just enjoying being out of the hospital.

We take Erin Faith to the International Center for Spinal Cord Injuries at the Kennedy Krieger Institute in Baltimore, MD now for intense physical and occupational therapy.  We return every few months, and each time we go, everyone is amazed at the progress she is able to make.  We also have PT a little closer to home 4 days per week, every week, when we are not at KKI.  It makes for a lot of time spent in the car, but it is well worth it in the end. 

Erin underwent her third surgery on August 8, 2008.  This surgery was to revise her chest wall and to remove a Gore-Tex patch from her abdomen.  During her recovery, when she wasn't allowed to spend any time on her stomach, Erin developed a pressure wound at the end of her tailbone.  This wound has taken two months to heal, and we are very lucky that it was not much worse.  This is one of the small issues that we deal with concerning Erin's spinal cord injury. 

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