By Sara Tischauser
Editors note: This is an update on the story of the Reed family that we have run in some of our previous issues over the past years.
Most parents would agree they would do anything for their child, so when one Seymour mom had the opportunity to improve her daughter’s life she didn’t hesitate with that decision.
Eliana Reed was born July 17, 2013, with cloacal exstrophy to Ashley and Mike Reed of Seymour. Eliana and her twin brother Blake were born at Bellin hospital and then transferred to the St. Vincent neonatal intensive care unit (NICU). Blake remained at St. Vincent’s for five weeks while Eliana was taken by ambulance within an hour of arriving at St. Vincent’s. Eliana was taken to Children’s hospital in Milwaukee where she stayed for two-and-a-half months.
Ashley had known early on in her pregnancy that there was a problem and doctors hadn’t expected Eliana to make it. However, Ashley said there were just a lot of unknowns along the way that the doctors didn’t know about that helped Eliana make it into the world.
“It was just expected that she wouldn’t make it,” Ashley said. “But then when she did they got her into Children’s [in Milwaukee] and fixed her up.”
Eliana had trouble with her kidneys from the time she was born. Ashley said they knew before Eliana was born that one of her kidneys wasn’t functional and the other kidney had limited function.
“The other kidney was slightly functional, but not great so they flooded her system with fluid to ‘kickstart’ the kidney which worked to increase its function to keep her alive long enough to grow to get big enough for dialysis when she was 2 years old,” Ashley said.
At home, Ashley and Mike continued to give Eliana around the clock care.
“We had to give her fluids at home through her G-Tube in order to keep her kidney functioning and to prevent dehydration,” Ashley said. “We would give her water every 30 minutes throughout the day. We did this because she was not having success with a PICC line at home. She had a septic infection at 4 months old and she had very limited areas in her body to place a PICC line after that first one failed.”
Ashley said her and her husband wanted Eliana home as much as possible.
“We wanted to keep her at home so we were willing to give her the water every 30 minutes to stay out of the hospital long term,” Ashley said.
This water regimen kept Eliana’s kidneys working at about 15 percent until she was old enough to have dialysis.
On March 4, 2016, Eliana started dialysis.
“We would bring her to Children’s in Milwaukee every Monday, Wednesday and Friday,” Ashley said. “We’d leave at about 6 a.m., dialysis would take about three hours and then we’d come right home. It would range from very stressful to very fun depending on Ellie’s health status. When she wasn’t feeling well, dialysis was tough because it would take a lot out of her, but when she was feeling well we would play games, be silly and have fun with the nurses who were saints.”
Eliana was on dialysis for just over one year. This time was difficult on Eliana and her family.
“Overall the dialysis experience was stressful due to the long drives and repetitious nature, but we look back on it fondly as the nurses became our friends and we had so much one on one time with Ellie,” Ashley said.
During dialysis, Ashley found out she might be able to donate one of her kidney’s to Eliana, so Ashley went to Froedtert Hospital in Milwaukee to be tested to see if she would be a match and able to donate a kidney.
At the time, Ashley said she knew she wanted to be the one to donate and she knew her and Eliana’s blood types matched.
“I was a perfect match and healthy enough to donate,” Ashley said.
Ashley was excited to find out she was a perfect match and the transplant surgery was scheduled for Jan. 11, 2017.
However, the day before the surgery Ashley said Eliana spiked a high fever and plans changed. At first Ashley admitted she was almost in denial that Eliana might be sick and was thinking she would get better in 24 hours. But when the nephrologist said Ashley needed to bring Eliana in to see what was going on Ashley said they got Eliana to the hospital. At the hospital they found out Eliana had a septic infection.
Unfortunately with the septic infection Ashley said the transplant wasn’t able to happen on Jan. 11.
“She had a septic infection, which was a huge blow because the next day we were supposed to be in surgery having transplant done,” Ashley said. “Instead she was in surgery having her central line removed. Then three days later we had to put new central line in to continue dialysis so we were just kind of like ‘oh man.’”
The septic infection was very hard for Ashley and the family to deal with.
“Here we are thinking transplant and we are going to be done with dialysis because we’ve done it for a year and we are like super excited and the day before everything came crashing down,” Ashley said. “And we are like not only is she not getting the transplant she’s also super sick cause having a septic infection is very dangerous.”
Eliana continued to battle her infection. To fight the infection Eliana’s body developed antibodies to fight the infection and doctors knew this could possibly cause a problem for the transplant.
“Afterward we found out we were no longer a perfect match and I might not be able to donate,” Ashley said about once Eliana had fought through the septic infection. “When kid’s get super sick they can get antibodies and reject the donor [kidney]. She had developed antibodies that were not compatible with me.”
The doctors decided that Ashley and Eliana were a close enough match and the transplant would be able to happen.
“The antibodies were still there but settled down so I was able to donate,” Ashley said.
Ashley said the doctors told her that even though she and Eliana were no longer a perfect match, the best option for Eliana would be to have a family living kidney donor.
After a two month delay the kidney transplant took place on March 8, 2017.
“[It was] just a two month delay which in hindsight is nothing, but at time it was devastating,” Ashley said about having to wait to do the transplant.
Ashley was in the hospital until March 11 after donating her kidney and Eliana was in the hospital until March 20.
“It’s crazy that you can give a child a kidney and not even stay in hospital two weeks,” Ashley said. “She actually recovered faster than me after transplant.”
Eliana was able to recover faster from the transplant surgery, because the doctor said that Eliana’s body had only ever known being sick. So when she was given a healthy kidney her body felt better right away. However, Ashley’s body had only known what healthy felt like, so when one of her kidneys was removed her body just didn’t know how to respond.
The doctors were also concerned about Eliana possibly rejecting the kidney because Ashley and Eliana hadn’t been a perfect match. When Eliana went in for her six week check up after the transplant the doctors found she was rejecting the kidney.
Eliana went through transfusions that the doctors hoped would stop the rejection from progressing. Ashley said Eliana received infusions for six weeks.
“Whatever they did for her worked really well because not only did it show that she stopped rejection, but she actually improved,” Ashley said. “She shows no sign of rejection.”
Now, Ashley said Eliana is doing remarkably well and is in school. However, Eliana will probably continue to have surgeries like colostomy revisions, bladder surgeries and maybe even another kidney transplant.
With Eliana being so young, Ashley said the doctors said there is a high likelihood Eliana will need to have another kidney transplant sometime in her future.
With all the trials Eliana has been through, Ashley said they are very thankful to have Eliana in their life.
“We are always so focused on the positive, the silver lining,” Ashley said. “We have her, we will do anything we have to do to keep her. She’s worth it.”
Now, Eliana is enjoying school with the other children her age.
“She’s in school,” Ashley said. “Loving it. She does really well. She has a really good attitude. Everyone always comments how joyful she is.”
Ashley said donating a kidney was something she was glad to be able to do for her daughter.
“I’m happy I was able to donate,” Ashley said. “I feel fine. People always ask but I forget [I donated a kidney], I feel normal.”