Hi, my name is Laura, And I have a little boy named Henry. And we’re here today, to tell you OUR story.
At the age of 23 I found myself pregnant, during this time I was already on the hunt to buy my first home. In June, the day of my birthday, the offer was accepted and I was just awaiting the keys.
During my entire pregnancy, I didn’t really grow in size, nor did I feel much movement, I would get the odd flutter at night time.
On Tues 11th October at 9:30am, I made my way to my midwife check up. I don’t remember much from that day, but I do remember this.
Midwife “I’m not finding a heartbeat” “Have you felt any movement”.
The midwife has now told me, I need to go straight to the hospital, no pit stops. Straight there!
The birthing centre was already waiting my arrival with a room ready for me. I was instantly put on the monitor to check the babies breathing. The signs were not good.
I barely had time to make a phone call as they wheeled me to theatre prepping me on the way. My head was spinning, my face flooded with tears. Although surrounded by doctors and nurses, I was alone and scared.
I didn’t wake up until 12:20. In a panicked state, coming round from morphine. The room is fuzzy. I see a nurse standing over me, and then he begins to explain. “Henry was born at 10:59am, he was 6 weeks early, and sadly they were some complications. Henry was born not breathing, and with his umbilical cord wrapped around his neck and his left arm twice. After 11.5 minutes of resuscitation and a jab to the heart he finally pulled through. He has been taken to the NICU ward”
What must be going through my mind, I have no idea. I’m not sure I believe it. Feeling hazy from the morphine, barely keeping my eyes open. His words don’t really sink in. Almost 10 hours later, feeling uneasy, tired. I’m wheeled to the NICU to see Henry for the first time. Overwhelmed by the busyness of all the equipment, I peer in to see Henry hooked up to all the machinery you could think of, I could barely see his skin through all the tape, wires and plugs. I can still hear the machines beeping.
He only weighed 2lb 6oz, however he was born with Hydrops. This is Severe swelling of the body, and is a life threatening problem. Henry’s kidneys began to fail because of this amongst other complications arising. Once all the fluid had finally been flushed out, Henry’s true weight was only 1lb 9oz.
Henry was on the NICU ward for 6 weeks, 4 weeks of this time he spent in the critical unit, where Henry underwent a lot of procedures, tests, MRI’s and scans, being poked, pulled and prodded every minute of every day. Being told almost every day that he may still not make it. Henry was diagnosed with a number of complex needs while he was in NICU, these being;
* Severe brain damage
* Cerebral palsy
Unable to hold Henry for the first 2 weeks I’m finally allowed my first cuddle, but only for a brief moment. I hold him tight knowing this could be the last time.
Moving forward 6months, it hasn’t been easy. Still processing the complications during Henry’s birth and the news of his complex health needs, the news just keeps getting worse. After being discharged from the NICU, Henry’s immune system was low. As a result of this we were unable to leave the house so we had the first few weeks of peace, making the most of snuggles on the sofa. As time went on, I started noticing things with Henry. Things that to a mother, didn’t feel right. Two things I noticed in particular, one being his breathing, and the second his eyes.
His breathing has always been very loud, husky like. Sounded like he was struggling. At night time it was like he was snoring and would sometimes even stop breathing. As for his eyes I began to notice he wasn’t really focusing or looking at anything. It was more like he was staring through it. So I quickly made emergency appointments for both of these worries.
Upon arriving at our appointment with the ophthalmology, the doctor begins looking in Henry’s eyes. He sees that Henry’s eyes are very cloudy and that his vision is very poor. He then begins to explain that Henry is in need of emergency eye surgery or we risk him going completely blind. The doctor proceeded to make an urgent appointment at Manchester eye hospital. Unfortunately the eye hospital was unable to perform any eye surgery on Henry due to his size and weight, this meant the chances of losing him were higher. Shortly after our visit to Manchester Henry was registered as blind.
As we arrive at Manchester (again). At the ENT (ear, nose and throat) department. We sit and wait for our name to be called. There it is, our name on the board. We’re called to room 2. I begin to explain my worries to the doctor as he examines Henry, showing him videos before he goes ahead with an endoscopy. Immediately he sees something is not right. Later saying that Henry needs major surgery on his airways. Following this Henry went on to having 3 major surgeries on his airways. Before deciding there was nothing else they could do until he turned 3.
Our worst year yet. The bad news just keeps coming. After having an assessment on the house by the Occupational Therapist for adaptions. We sat and waited for a survey inspection. The surveyor came by the house, he looked around the rooms while writing on his clipboard. He begins to explain that the amount of adaptations Henry is needing in order to make the house accessible wasn’t possible. My house simply wasn’t suitable, and I had to move.
Already struggling each month, I couldn’t afford to buy the property we needed. I share the outcome with the OT, who passes me to someone who could possibly help in find suitable accommodation.
Months go by and I’ve still no news for a house. I’m passed from person to person. Only to get the same reply “We can’t help you”
I’m managing with a lot at home. On my own. Not only with Henry but also Myself. Henry’s complex health needs worsened, meaning we were in and out of hospital for weeks at a time. Following this he suffered severe complications during his final major surgery on his airways almost costing his life, resulting in him needing to be in intensive care for 6 weeks.
And me. “ I’m Okay” well that’s what I tell them. But inside Im screaming “ DOES IT LOOK LIKE IM OKAY “ it probably did, I was very good at hiding my emotions, always smiling, not having a worry. But really I’m grieving. Grieving for the child I didn’t get to have. Knowing Henry will never get to see his mummy, or hold my hand while we cross the street. I didn’t want to talk about it. They wouldn’t understand. It was easier saying nothing. Just smile.
It’s been a year since I made the decision to leave my job and become a full time carer for Henry. Juggling hospital appointments, meetings, daily needs, general errands and work. I was exhausted. Then BAM, the world comes to a halt and we’re hit with a serious pandemic. With Henry’s complex health needs we were listed as clinically extremely vulnerable. For a total of 13 months and 2 weeks we had to shield. With no contact. We was on strict instructions NOT to leave the house until advised otherwise. All of Henry’s appointments were either rescheduled or made via phone call.
Shopping had to be left at the front door, we chatted to family through the window. It was hard.
FREEDOM. We’re officially out of shielding and with careful measures and social distancing we can visit friends and family, and have a walk to the shops. With normality creeping back in, I’m now at a dead end with the house. Unfortunately the council are unable to provide me with a suitable home. And due to home circumstances I am unable to afford the size of home we need.
So here I am. I am turning to all of you for help. I am needing to raise around £200,000. This will enable me to purchase the size of home that Henry needs and to adjust the home for suitable access.
Thankyou for taking the time to read our story. Your donation however big or small is massively appreciated.