Hannah (5) defies the odds of finger, toe and lower-leg amputations caused in womb

A developing foetus floats in amniotic fluid in its mother's uterus. The fluid is contained within a sac called the amniotic sac, which has an inner and outer layer. The innermost layer is called the amnion. Amniotic band syndrome (ABS) is a very rare condition (occurring 1 in 1 200 to 1 in 15 000 live births) that results when the amnion is damaged (ruptures or tears) during a pregnancy.

Fibre-like bands of amnion peel away from the sac and tangle, attach or wrap around parts of the developing baby's body, disrupting blood flow to the area and preventing it from developing properly. In some cases, the bands wrap so tightly around an area that they cause it to be amputated.

This is what happened to Hannah Middleton, who was born without two middle fingers on her right hand, some of her toes on her left foot and no right foot, as result of ABS.

It's not clear what triggers the damage to the amnion and the syndrome does not appear to be genetic or hereditary. So, the likelihood of it occurring in another pregnancy is not common.

Watch Hannah achieve all her milestones and more.

"First, look at her beautiful face"

Amniotic band syndrome is usually diagnosed at birth - exactly as it was in Hannah's case when she was born six weeks early - at 34 weeks - on 2 March 2015.

Her mother Nicole sees it as a blessing that the condition wasn't diagnosed during the pregnancy. "There is little that can be done to correct it, and we would simply have had a very stressful pregnancy - which wouldn't have been good for Hannah and me."

"At 34 weeks, I was admitted to hospital as I was losing amniotic fluid and Hannah was born via emergency C-section as a result of this complication," says Nicole. "We were excited and had no worries at all beyond the low amniotic fluid. We had no idea about the amniotic band syndrome."

"However, as soon as Hannah was born, I heard the doctor say there was something wrong with her foot. The paediatrician took her to examination table and though I wasn't able to see her, my husband Matthew could see everything taking place, and I noticed he had massive beads of sweat on his forehead. Then, he fainted."

"When the paediatrician brought Hannah over to me, he said, "First, look at her beautiful face," and asked me what her name was. Then he showed me that her right foot was deformed. It had shrunk into a ball on the end of her leg as a result of the amniotic bands that attached themselves to the area. Her left leg ended in a clubfoot (where the baby's foot is twisted out of shape or position - usually rotated inward or downward) with toes that were not fully formed. Her right hand was missing two fingers," says Nicole.

"And, on her right wrist, she had a scar, almost as though an elastic band on her wrist had left an indent - a sign of another amniotic band that would have likely caused the hand to be amputated had she not been born at 34 weeks."

"I will love her no matter what"

"We were all in shock. Hannah was immediately taken to the Neonatal ICU. My mom, dad and twin sister were in the ward waiting for Matthew and me. I grabbed my mom's hand and said, 'I will love her no matter what.' Matthew and I were devastated, and he was crying which I had never seen him do before. We went through the emotions that come with a huge shock, but soon began to gather strength from God and our families. I wondered how she would walk. However, in the back of my mind knew she would be okay and live a full life."

"The two middle fingers had already been amputated"

Looking back, I had a good pregnancy," says Nicole, "but, I do recall always feeling uncomfortable and felt like Hannah was uncomfortable. It's hard to explain. Midway through the pregnancy, my stomach felt so uncomfortable, as if Hannah was stuck in an awkward position that I had to lie down at times. Once Hannah was born, we looked back at the images from a 28-week 4D scan we had done. In a picture showing her face and hands we could, in retrospect, see that the two middle fingers had already been amputated. But, we didn't know it at the time."

"When she took her first steps, we were so happy"

First, Hannah's clubfoot was straightened. Then, when she was a week old, she had surgery to seal up the end of the right leg. "Hannah was really strong, and was released from hospital two weeks later. She breastfed and developed absolutely normally. At three months old, she had another surgery to lengthen her Achilles tendon - part of the treatment for her clubfoot. Thankfully that also healed perfectly," adds Nicole.

"She reached all her milestones and at 11 months we went to see prosthetist Kyle Viljoen, who fitted her first prosthetic leg and has worked with us since. Like all babies, Hannah supported herself on furniture and other items, stood up and then by 14-and-a-half months, was walking."

"When she took her first steps, we were so happy and extremely proud of her. Hannah has always brought us huge perspective on the meaning of courage, of living life without complaining and getting on with things with joy and courage."

"I had nightmares Hayley would be born without arms"

On 20 October 2016, 19 months after Hannah's birth, her sister Hayley was born. "I was very stressed through the second pregnancy and would have nightmares Hayley would be born without arms. We went to see a foetal specialist and it turned out Hayley was fine. However, when she was born, we kept asking 'Is she okay?' The doctor reassured us over and over again that she was. We were so relieved," says Nicole.

"Hannah was the first child at her school to climb the jungle gym"

Hannah's journey has had its challenges. The bone in her right leg continues to grow down towards the amputation point which will require surgery to revise the bone in the future. When it's very close to the surface, the area can become very inflamed making wearing a prosthesis very painful. In 2017, Hannah fractured the bone, called a buckle fracture in her right leg. "Even when she is not able to use her prosthesis, she hops around on the other leg which is so strong. She never lets it stop her and always does things with a smile," says Nicole.

"Hannah was the first child at her school to climb the jungle gym, walk across it and go down the slide on the other side," says Nicole. "When Hannah hops on one leg, all the kids follow after her and make a game of it. The teachers and friends at her school have given her so much care and love, and we are very grateful for that." Hannah is also learning ballet and watching her dance and move across the studio floor, it's clear that she has mastered the use of her prosthesis even in this setting - a remarkable achievement.

Hannah has so far had five prosthetic legs. The latest features a suction element which prevents the leg from sliding sideways and also lifts the end of her stump off the base of the prosthesis sleeve. So there is no pressure on it, because it rests above the end point of the prosthesis.

"Because I was born this way"

About a year ago, she began to notice - at the age of four and a half - Hannah began asking Nicole why she doesn't have two legs. "I would explain and reassure her she would be fine. I would also tell her that is how God wanted her to be, and that she is different and will always be. I always say to her, 'why try fit in when you were born to stand out?' and to be confident in herself. Recently, at the park, children came to her asked, 'Why do you have that foot (referring to her prosthesis). What happened?' And she replied, 'because I was born this way,' and she carried on playing happily. That's Hannah," says Nicole.

"At the same time, Matthew has been an amazing support to us throughout," says Nicole. "Hannah is an absolute daddy's girl, and he is such an amazing husband and father. He has been the backbone in our family. He always has a positive outlook on things and I know Hannah gets a lot of strength from him."

Discovery Health Medical Scheme has supported us all the way

"I want people to know about Amniotic Band Syndrome so that we can create awareness around disability and show how Hannah has overcome the challenges she has had," says Nicole.

"I also want to point out that as members of Discovery Health Medical Scheme (DHMS), we have felt incredibly supported. Hannah's hospital-related costs have all been covered in full. We paid for her first prosthesis and DHMS covered all the rest. Prostheses can cost up to R100 000 each. Their financial support has enabled Hannah to live a normal life. And, as she gets older, she will grow and we will need different prostheses, possibly more than one at a time to allow her to play sport and more. We are so grateful that we haven't had to worry about how we will pay for the equipment needed for our child to walk."

"I want her to feel that she is unique but as capable as anyone else"

"Hannah loves animals, especially horses and always says she wants to be a vet," adds her mother. "So, if this is still her dream when she is older, I would love for this to happen. I never want her need for a prosthesis to affect her life or stop her from reaching her goals and dreams, from building a career and a life."

"My wish for her is that she will feel confident, happy, independent and never to doubt herself or feel less than anybody else. I want her to feel that she is beautifully unique but as capable as anyone else, that she is able to do anything she sets her mind to."

So far, Hannah is set to achieve all that Nicole and Matthew hope for her - and more.

Children's Wisconsin: Amniotic band syndrome
Hopkins medicine: Amniotic band syndrome
Benioff Children's Hospital: Amniotic band syndrome