Hana Allen

As our family awaited our referral, expected in December, 2004, we reviewed the special needs lists that arrived from our agency via email every couple of months. In September, a little girl on that list stole our family’s heart and we knew, without question, that she was to be a member of our family. This is the story of that special little girl.

 

Rao An Ping was found abandoned on October 15, 2003, and based on her condition, a birth date of August 13, 2003 seemed reasonable. This little girl was not just your average abandoned little girl. Rather, An Ping had a very serious medical problem. A problem that we guess led the parents to leave her where she might have a chance at life. A place where she might receive the surgery she would most definitely need. And a place where she might find a family who could care for her medical needs.

 

An Ping, on examination, was found to have a condition the Chinese called congenital closed anus, and we Americans refer to as imperforate anus or anal atresia. What this means is that this precious little girl had only what is called a “fistula,” or a narrow opening through which waste could flow from the body. This fistula appeared to be the only opening on An Ping’s bottom.

 

From the orphanage records, it was determined that “she would be very difficult to raise, especially in a group feeding arrangement. Therefore, she was sent to a foster home.” All written records indicate that An Ping not only did well, but thrived, with her foster family. This family, we later learned, included a husband and wife, An Ping, and two older foster children – one with Downs Syndrome and one with Cerebral Palsy. What a family this must have been.

 

But this story doesn’t end there – with us falling in love with this little girl on the special needs list and bringing her home. No, the story has only begun and we marvel that Hana, as we now call her, is alive and doing well. In fact, when we brought her home and our surgeon prepared to examine her, his first request was, “Let me see her colostomy.” Our answer? She has no colostomy. Hana was 16 months old, alive and well, and no evidence of chronic kidney or urinary tract infections, which, at a minimum, should have been present.

 

Our surgeon went on to say that he recommended that we take her to a particular surgeon, considered one of the best in the world in performing these surgeries, to give her the best chance of a normal life. Dr. Alberto Pena, now the Director of the Pediatric Colorectal Center at Cincinnati Children’s Hospital Medical Center, was located at Schneider Children’s Hospital in New Hyde Park, NY, was a long way from our home in Albuquerque, NM, when we first took Hana to see him.

 

We found Dr. Pena was booked up prior to his relocation to Cincinnati Children’s Hospital and we’d probably have to wait. However, one day we received a call asking us if we could be in New York the following Thursday. We were on our way, all six of us, for Hana’s surgery.

 

When Dr. Pena examined Hana he commented to the attending radiologist that she’d “never see another little girl like this. One who had had no surgery, was alive and well, and with no history of infections. This little girl was a miracle.”

 

Well, after 7 ½ hours of surgery and 11 days in a hospital, Hana was totally “re-plumbed.” Dr. Pena told us that she had an 85% chance of normal bowel and bladder control. Further, he ruled out heart and kidney problems, common with children with this type of defect; however, we did discover two months following this first surgery that Hana had an additional problem called a tethered spinal cord.

 

We found a pediatric neurosurgeon, Dr. Michael Handler, at Denver Children’s Hospital whom we liked immediately. He performed spinal surgery on Hana on July 6th, 2005, to de-tether her spinal cord. The surgery was a complete success.

 

The story does not end there, either. In the few years since we first met Dr. Pena, and now that he is at Cincinnati Children’s with his team of doctors comprising the Colorectal Center for Children, more has been learned about children with cloaca and tethered spinal cords. One thing realized is that children, like Hana, with cloaca and tethered cords, often have what’s called a neurogenic bladder. That is, a bladder that spasms continuously, often refluxes urine back into the kidneys and basically does not behave in a manner consistent with a normal bladder. If not diagnosed early enough, many of these children will be found to have significant kidney damage.

 

Since our first surgery with Dr. Pena in New York in 2005, we have continued to bring Hana to Cincinnati for checkups. And because of bladder concerns, we requested a full urological workup, by Dr. Shumyle Alam. Hana, as expected, was diagnosed with a neurogenic bladder, but fortunately no kidney damage has been evident. Dr. Alam is unable to explain the absence of reflux or the expected kidney damage, but believes it is possibly due to early diagnosis and treatment. Another change in Hana’s condition is that, due in part to the tethered spinal cord, she does not have the bowel and bladder control that Dr. Pena had hoped for. Rather, we manage her bowels via daily enemas and catheterize every four hours to empty the bladder of urine. None of this, though, adversely affects Hana’s daily life. She’s just a normal six-year-old doing what every other child her age does. Plus, she raises and shows Nigerian Dwarf goats and is about to begin learning how to ride horses so she can barrel race and pole-bend at our local rodeos.

 

This past December, we were once again back in Cincinnati, this time for bladder surgery. On this trip, Hana has had three procedures done: A bladder neck reconstruction to prevent urine from leaking out of her urethra; the creation of a Malone, or stoma, through which the colon can be cleaned out daily; and, the creation of a Mitrofanoff, or stoma, for cathing and removing urine from the bladder. Overall, Hana did very well and we were back home in time for the holidays.

 

During our recent stay in Cincinnati, we were blessed to be living at Ronald McDonald House. Here, Hana, her brother and I had our own room and private bath. Each day, caring community volunteers provided home-cooked meals, cared for us and the House, hosted activities that we all could enjoy and even offered shuttle services to area stores, the Cincinnati Zoo, Cincinnati Museum Center and Newport Aquarium. We are so grateful for this House and all that it offers – and for its generous supporters.

 

How do we explain why Hana’s alive and doing so well? Well, our answer to that question is two-fold: First, our personal beliefs are that God has had His hand on Hana throughout her short life and has protected her. And second, the care she received from the foster family, and at the orphanage, saved her. They cared for her, fed her, and somehow were able to keep her system, as impaired as it was, working. The doctors can’t explain why Hana’s alive. They can’t explain why she’s so healthy. This is truly a testimony to God’s grace and to the loving care she had to have received from the foster family and orphanage. I add the word “loving,” here because I feel that for Hana to have done so well could have not been merely due to being “cared for.” No, she had to have been loved.

 

We have been asked by several social workers if we have experienced any attachment problems with Hana. We can honestly say that from the moment we received Hana, at the Civil Affairs Building in Nanchang, we have completely bonded with her and she with us. She is as attached to her dad as she is to her mom. She also loves her three brothers and sister and they her. A child can only “attach to” and “love” others if they have been loved. Hana was loved.

 

Hana was loved in China and she’s now loved in the United States. What a blessing for her and for our family. Yes, this special little girl has come a long way since that referral photo we first received. We’ve been asked why we chose a special needs child. Well, first, we didn’t choose her, God did. He planned for Hana to be a part of our family from before time began. Second, we believe that all children are special needs children, regardless of their physical condition. They are special and we need them and they need us. What a blessing we have experienced in our journey to Hana – especially in Cincinnati’s Ronald McDonald House and Cincinnati Children’s – and what blessings are yet to unfold as that journey continues.