Winnie Akumu’s Story

Have you ever heard of the Amniotic Band Syndrome?  Winnie Akumu narrates her experience of  having a preemie at 32 weeks with the amniotic band syndrome. 

It was the worst pain I have ever felt despite this being my second pregnancy. I had left work to see the doctor as I had the usual back pains. I was given a clean bill of health and told to just go home and relax for the pain to subside.

I was 32 weeks pregnant so that was good news since I still had 8 more weeks to go. I reached my house at around 8 pm obviously exhausted but happy all was well. Had my supper and retired to bed at 10pm only to be woken up at 11:30pm with a very sharp pain across my tummy.

I did not think it would be contractions considering I was not even nearly due. So I ran to the bathroom to see if all was well. It was then I saw a pinkish discharge. Instantly, I knew something was wrong. I woke up my husband and called my friend who is a nurse. She advised me to rush to hospital that I was already in labour.

I was scared and so much ran through my mind.

We reached the hospital at 12.30am. By then I had dilated to 6cm. I knew my baby would be born soon. At exactly 1am my son born at 32weeks weighing 1.5kgs came into the world. I was happy.

I had no idea what was in store for my baby and I. This marked the beginning of a tough period in my life. My preemie son was born with a condition called amniotic band syndrome on both legs. This meant he had to undergo at least 3 surgeries before reaching one year old to correct the defect.

His doctor told me that his first surgery was due when he was only 2 days old. My heart sunk. I felt for my boy knowing there was nothing much I could do but pray. The surgery lasted for an hour. It was successful! I was elated. One hurdle down and a number more to go.

My joy was short lived. My baby developed breathing difficulties and was rushed into the Neonatal Intensive Care Unit (NICU) where he spent the next 10 agonizing days. I felt down. I was to be discharged yet my baby was in the intensive care unit. How do you go home and leave your child behind in NICU? It felt so unfair.

He then developed jaundice so was put on phototherapy. He became anemic and had reflux too. This made him survive on only hospital IV feeds no breast milk. It was hard. I cried every day for my son.

The stress had taken a toll on me and I could not produce any milk for my son. This made me feel like was not fighting for him. The daily commute to and fro home for a new mum is not easy. But God always held my hand even when I felt tired and wanted to give up.

My God is faithful and he got better and was taken back to the NBU for weight gain. While in NBU, he gained weight slowly that at times I got so discouraged. He was always on meds because he kept on developing infections one after another. Blood was drawn for the laboratory tests every day.  I could hear him cry during these procedures and felt like it was my fault. I felt I had failed him as a mother since I could not shield him from his pain. He had a daily transfusion of blood too. I was heartbroken.

It was a tough journey but 40 days later we left the hospital. My joy could not be described together with that of my whole family despite a huge hospital bill as my insurance was already exhausted but through all this all I can say is ….God is faithful.

Taking care of a preterm baby is hard and I thank God for the strength and support from my family to get through. Hitting his milestones was never a walk in the park but we are doing well despite taking his first steps at 2 years of age. He underwent 2 more surgeries to correct his amniotic band at 5 months and 10 months respectively. We are still doing occasional doctor visits to monitor his legs post-surgery and all we have are his scars to show God is truly faithful even when all feels lost.

Every day is a miracle when I look at my son…the rock and when he flashes that beautiful cheeky smile then I know he is stronger and such a fighter than all of us combined. I am most grateful to God and to the medical fraternity.

WHAT IS AMNIOTIC BAND SYNDROME?

Amniotic band syndrome can occur when the inner layer of the placenta, called the amnion, is damaged during pregnancy. If this happens, thin strands of tissue (amniotic bands) form inside the amnion. These fiber-like bands tangle around the developing fetus, restricting blood flow, thus affecting the growth of certain body parts. This can cause congenital deformities of limbs. In some cases, strands can tangle so tightly around the limbs of a fetus that they amputate them. Amniotic band syndrome is usually diagnosed at birth, but can sometimes be detected in the womb by ultrasound. To learn more on this condition; (https://www.hopkinsmedicine.org/health/conditions-and-diseases/amniotic-band-syndrome)