Today is World Prematurity Day, designed to raise awareness of preterm birth and the babies and families affected worldwide. We chat to the amazing mamas behind Dubai based group Small & Mighty Babies here in Dubai and hear some of the incredible stories of the mums and babies they’ve helped.
Small & Mighty Babies is a group set up by Joanne Hanson, whose little boy George was born prematurely and who now works to bring people together by offering support and care to those families with babies born a little too soon who are currently in NICU or who have recently come home. The group she’s created is by mothers who have experienced the NICU journey first hand and now want to help others and surround them with love. It is quite simply awe-ispiring. Read on for the very humbling, very real stories of some of the mamas and papas and tiny babies helped by Small & Mighty Babies – you might want to grab a box of tissues before you do…
Click through the slide show to read stories of our small and mighty heroes.
Read More: That Mama, Joanne Hanson
After several years of trying and failed IVF’s and a miscarriage I finally had a viable pregnancy. Other than the sickness which was not just in the morning and lasted the whole 7months (yep Cameron was 2 months early) it was a “normal” pregnancy. So we decided to have one last couples holiday and decided on a 5* resort in the Maldives. To be honest the weather wasn’t brilliant that time of year and so the sea was quite rough but it was a break before we had a little bundle of joy. However on day 6 of the holiday at I started to bleed and on calling the Dr she informed me I was going in to labour. We were 45mins away from the nearest “medical facility” and the water was rough. We ended up getting to the facility where I gave birth to Cameron who was breach and not breathing.
We managed to revive him and keep him alive, even built an incubator, for 11 hours before we could get a seaplane to a hospital in Male where we remained for 11 days as we couldn’t get him back to Dubai without a passport!
The whole thing was incredibly stressful but with a happy ending as he is now 18 months and doing well.
I had been in Dubai less than 6 months with my 3 year old and 1 year old when I was surprised to find out I was pregnant and even more surprised to learn I was expecting monochorionic twins (identical twins that share a placenta). At 13 weeks my twins were diagnosed with Twin-to-Twin Transfusion Syndrome, a rare condition unique to multiples that share a placenta where there is an uneven flow of blood across the placenta. It is fatal in up to 90% of cases without treatment. The treatment is laser ablation surgery which carries only a 30% chance of both babies surviving.
I was very fortunate that at 17 weeks I had this surgery and, against the odds, my babies survived it. Just when I thought we could relax a bit my pregnancy continued to have complications and anxiety. I knew my twins were going to come prematurely I just didn’t know how premature. I tried to hold on to the thought that every week and every day that I could keep them inside was a blessing I felt enormously isolated; having my first and second child had been a wonderfully bonding experience for me as I had friends entering parenthood at the same time and also met lots of new friends….when I was pregnant with the twins I struggled to find many friends having their 3rd let alone 3rd and 4th babies and ones whose very survival came with such poor odds.
I spent time visiting the NICU, talking with the nurses and trying to prepare myself for what was to come. When my twins sons, Digby and Arto, were delivered at 33 weeks I expected them to be small but otherwise pretty robust having had steroid shots to boost their lung development but I was still completely overwhelmed and emotionally unravelled having two babies in separate incubators that were unable to breathe, feed or regulate their body temperature on their own. I couldn’t see them right away due to my own recovery, I couldn’t them hold them initially and struggled with milk supply. It was so different to my previous experience of birth and parenthood and my feelings of guilt and sheer physical exhaustion were immense.
While I was so grateful for the outpouring of love and support from friends and family I only wanted to speak to someone who had been through this, someone who hadn’t birthed their baby and walked out the hospital doors with a proud bundle of joy in their arms and not just that but someone who had been through this with multiples. When I finally came out of the fog of early parenthood of premature twins I started supporting other families who were going through complicated multiple pregnancies which led me to meet with Joanne and we immediately bonded over our shared passion for using our own experiences to support other families through the intense emotions of NICU and our desire to create a continuous, consistent support network.
My son was born at 24 weeks completed and he weighed 600 grams only. I went into early labour without knowing it, and the cause was an incompetent cervix. My cervix length was ignored at 15 weeks being 2.4 cm only and kept decreasing until i noticed blood discharge with some sharp pain while I was still 23 weeks pregnant. We had a hard time finding a hospital that would accept us and then i was admitted to zulekha dubai and my son was born. It was impossible to have the emergency stitches because i was fully dilated already.
My son was born with grade 4 ivh on the left sideof his brain. He was on ventilator for about 2.5 months out of his 4 months nicu stay. He failed to be extubated several times then we gave him a dose of steroids. He has chronic lung disease and he will undergo laser surgery for his eyes after a week. My son also suffers from a severe hearing loss and we should know what is needed to be done for this. When I first texted Joanne, I was searching every possible angle to be heard and supported! The hospital has confiscated our passports, bills were accumulated and we didn’t know what to do, plus the emotional wreck we were drowning in. Joanne, Lala and the ladies in the group were amazing in sharing their experiences and advising what steps to take! I knew i can get my son a seperate insurance card, I knew that it is a normal procedure to sign all those consent forms at the hospital and I also knew hospital cannot confiscate our passports nor hold our baby’s birth notification, because of these ladies… as any mother who was in my place, especially as a first time mom, has faced troubles with milk supply at one stage because of all the stress and running around! Many many mamas in the group shared their experiences with this regard and helped me increase my supply and one mama even lent me her double pump.
The 4 months journey of the nicu was nothing less than a bumpy road for us and i honestly wouldn’t be able to pull through without the support of these ladies.
Aside of the health issues my baby is currently dealing with, I know he is a mighty one! And I am truly blessed he is with us today.
I’m a mum of 3 kids. Tom my eldest is 11 and was very much the textbook – easy pregnancy followed by being induced as he wasn’t ready to come into this world. It was the complete opposite for my twins Madeleine and Penelope – after a harder pregnancy of a few bleeds and bedrest I gave birth at 27+1 weeks – which is a ridiculous 3 months early. The early labour was caused as Madeleine’s sack became infected and sadly after just over 24 hours she passed away of sepsis and heart failure. Penelope fought and battled away for 70 days in NICU – learning eventually to breath on her own and slowly gain weight – she was born at 950g and in the first week dropped to just 730g which was heartbreaking to have to go through. Most babies loose weight when they are born, but when they are so tiny each gram really does count! Life in NICU opens your eyes to the fragility of life, and for the parents it’s extremely hard watching your child battle for life.
Emotionally it’s draining – I couldn’t hold Penelope for a month – she was so small, and we were worried that she would also succumb to an infection – something that we were told was her biggest threat. I was also having to deal with the loss of Madeleine, and get over my squeemishness of needles and IV lines – it’s not the normal experience of a pink chunky baby that you take home after a few days. It can be a completely isolating experience – in Penelope’s NICU you weren’t overly encouraged to interact with other parents – as you don’t know what they are dealing with on that particular day – although friendships were formed over the handwashing sink! Visiting rights can be extremely strict so it’s hard for friends and family to understand what you and the baby are going through as they may not be allowed to visit. Once you are discharged you don’t overly want people to come and visit or go out much as again it’s stressful incase they pick up germs and bugs. What Small and Mighty does is provide an amazing support group – in my case and many others there was no time for the pre-natal classes where many friendships are formed. It has provided me with friends that understand what I’ve been through and what I’m facing. My delight at finding hand santizer on special in Carrefour… my heartbreak of yet another trip to the Doctors.
Preemie babies are amazing – their fight for life, but for the families there is the additional worry – are they hitting their milesstones – corrected age or not… if not is there an underlying condition that is not yet discovered….Having someone else that understands the additional layers of stress of having a premature baby when you are far away from family is a blessing and I count my lucky stars that I stumbled on Joanne’s card at Bistro which led me to Small and Mighty babies.
Hello, meet small and mighty Sophia Anna. At 12 weeks when my waters broke around her twin Olivia Eva, the hardest journey of my life began. I was told over and over again I would lose both babies. At 32 weeks my beautiful Girls were born. The journey was tough and both had to face different outcomes. Although my beautiful Olivia is not with us today, she gave us a strength and her bravery gave us our beautiful Sophia. Sophia was in Nicu for 33 Days. She had to learn how to swallow, pick up weight and become strong enough to face the world on her own. Born at only 1.7kg, she is now a year old and weights 9.8 kg. She hasn’t missed a single milestone and started walking this week! These babies are survivors! They are strong, and together with the amazing group Small & Mighty we got through the toughest year of our lives. NICU can be the scariest place, but the staff at City made it the complete opposite. They became our family and gave us hope. We are grateful and blessed by the journey we walked.
One week before my wife’s flight going back to Philippines.
Our Daughter came to this world last August 23 2018, in her own unique way, it was around 4:30 AM that Claire (my wife’s name) is experiencing some back pain, we though that it was normal for her 24weeks gestation time, but when we saw fresh blood we started to get worried i told my wife that we need to go to hospital as soon as possible, when we are on the ground floor of the building, while Im looking for a taxi, my wife cannot hold baby anymore and so the baby came out to the world it was a miracle that when baby came out she was fully intact in her amniotic sac , i saw my wife grab something from her lower body and i know from that point that it was our daughter, i rush to her and my wife handed over baby to me saying “baby came out” she was crying and my heart was so shattered seeing her like that, we know that the situation was very bad and i need to go to the nearest hospital because baby cannot survive without any medical attention & equipment’s , i grab our baby and put on the towel that i brought and run as fast as stable as i can, i left my wife on the road, while i was running i told our daughter that ” She needs to survive because we want to spend the rest of our life with her taking care and love her”. when i reach Al Raha Hospital i gave our daughter to Doctor, and they were shocked to see that baby still intact in the amniotic sac, i went back to the road to help my wife and by the time we reach the emergency room they are performing some emergency procedure on her, the baby started to move and they transfer her to there nursery, the doctor came to us and told us that, the baby is only (730g) but shes fighting so we will never gave up and they will do anything in there capacity to keep her alive before transferring her to specialized hospital, after 30mins Corniche Hospital respond there request to transfer our baby spend the rest of her nicu time in Corniche hospital, every day me and my wife are going to visit her with positive mind saying she can do it shes a fighter.
Our baby is strong and her recovery was fast she never face any life threatening situation on her stay she is currently on her 78th day in NICU, the hospital called us today that she will be discharge on Saturday and it was the best news i hear in my entire life, i know we will facing more trials in the future specially that we don’t have insurance for baby and the hospital bills is so huge, but for us the most important thing is that our baby is alive and we can spend the rest of our life taking care and loving her.
Early in my pregnancy my Doctor wasn’t happy with one of my twin’s growth progress and I was referred to a perinatal specialist. Super scared and confused at my 19 week scan my doctor’s suspicion was confirmed and my twin B was diagnosed with IUGR (intrauterine growth restriction) this was later increased to SIUGR (Severe IUGR).
There was no cause for it, nothing I could or could not do to help or intervene. Both me and my husband went through genetic testing to try and find a cause but nothing conclusive came of it.
During each weekly scan my twin B would fall behind twin A even further and my Dr. would start talking about twin B’s viability and the possibility of losing him. The goal however, was to get to 32 weeks.
This would be a milestone where twin A could be delivered safely but twin B’s viability was still very uncertain.
As each week passed and twin A grew and developed as expected, I was hoping for twin B to catch up, I was hoping for a miracle to happen or in fact for all those previous scans to be incorrect.
His body didn’t grow but his head was always on schedule. It gave me hope that his brain may in fact be developing normally.
My Doctor had the best bedside manner a woman carrying a high risk pregnancy could wish for, however he did prepare us for the worse. His words were always kind but the scariest I have heard to date.
At 30 weeks I was emergency admitted for delivery due to my own sudden very high blood pressure.
All I could think of was the 32 week goal the Doctor had set himself and our twins. I was not letting these babies come that day! My BP settled and I was allowed home the following day after I had the steroid shots for the babies’ lung development.
I was on twice weekly scans from there on.
At 32w and 2 days it was time. Twin B’s blood flow had reversed and I was admitted for an emergency c-section.
Lucas (twin A) was delivered weighing 3.85lb
Charlie (twin B) weight in at just over 1lb. He was so tiny, the Doctors were not sure wether he would survive the delivery.
He spend 89 long days in NICU, 72 without his brother.
This was the hardest and most frightening time of my life but watching that tiny miracle beat all odds every day was incredible!
Charlie and Lucas are a healthy and happy 21 months today and are doing all the things full term babies are doing! Yes, Charlie took 8 months longer to learn to walk and he is still 4kg smaller than his ‘big’ brother but he continues to beat all odds just like from day one! He even waved at all the doctors after delivery
On the early hours of May 5th 2012, I awoke with a start, my water broke, I was 28 weeks pregnant. My husband took me to the hospital in London, I was closely monitored and was given steroid injections, to try and delay labour, however in the early hours of my twins were born. Joshua weighted 2lbs 5oz’s and was resuscitated as we was not breathing, Emily was born at a weight of 2lb 2oz. Both were rushed NICU and placed in incubators.
Over the next few days, the twins susceptibility to conditions of prematurity started to sink in, both had severe jaundice, and difficulties gaining weight. Emily suffered serious digestive problems and was diagnosed with gallstones. Joshua had milk spill over to his lungs and this caused major setbacks with his breathing and was taken off cpap and put on a respirator, then about a week later blood was discovered in his stools, he was then put on nil by mouth for a week. Fortunately he recovered after a week, this was such a emotional time for us.
During the first few weeks, between both of them, they were also given 5 blood transfusions between them and after finishing the high dose ibuprofen for PDA, Emily was diagnosed with pulmonary valve stenosis, a serious heart condition. After close scrutiny by cardiology over the next weeks, Emily was further diagnosed with a hole in her heart.
Finally after being in NICU for 3 months, Emily finally came off oxygen and was allowed to come home. Then two days later, after receiving thorough training on oxygen care, Joshua also came home using cannula oxygen. Unfortunately the day after he come home, he had a scary setback and stopped breathing, luckily the ambulance came very quickly and was taken to hospital, thankfully he was ok.
After a tough, tiring and draining 5 months, we finally weened Joshua off oxygen. Emily had several check ups for her heart with mild improvements after each visit to the specialist.
Fast forward, Joshua and Emily are now 5 1/2 years old and thriving. Emily’s hole has remained the same as she has grown and allowing her to live a normal, healthy active life – horse riding. They are both happy, cheeky and energetic children that love each other to bits.
Feature image from Pinterest.