Molly's CDH journey from a 10% chance of survival to now.
[IMG]WP_20150401_13_04_30_Pro[/IMG]On the 1st of November our daughter molly was diagnosed with a life threatening condition from in the womb called a congenital diaphragmatic hernia it was detected on ultrasound scan (CDH) Is when the diaphragm in the first trimester of pregnancy what controls the lungs ability to inhale exhale, molly's failed to form so which allowed a hole and an opening allowed all her abdominal organs into the chest cavity. This inhibited her lung growth so we got sat down and talked to about her survival rate which before she was born as 50% chance of survival we were frightened but we tryed to stay positive but prepared ourselves for the worst but hoped for the best.
26 of march 2015 molly was born 6 lb 12oz she was taking from me immediately and was taking down intensive care where the team were waiting for her she was put on a osilator and other life supports to try keep her stabilised untill she went for CDH repair but day 3 molly was showing signs of deteraiting so we were sat down in a room and explained from doctors that molly was becoming more poorly she had heart and lung hypertension she was working to hard she needed more support so they asked for my permission if they could put her on a life support machine called ECMO The ECMO machine is similar to the heart-lung bypass machine used for open heart surgery. Extra corporeal means ‘outside the body’, and a membrane oxygenator is a piece of equipment which would deliver oxygen into her blood., ECMO is the use of an artificial lung (membrane) outside the body, (extra corporeal) that puts oxygen into the blood (oxygenation) and continuously pumps this blood into and around the body. Being put on Ecmo had its risks to it as well so that's why they asked for my permission if they could go ahead and put her on it but of course I said yes it was the only option she had left to try keep her alive.
So she then was transferred in an ambulance to the freeman hospital for further treatment and was immediately put on Ecmo and a ventilator and other support they then sat me down and explained that molly had the most severe congenital diaphragmatic hernia and she was giving only a 10% chance of survival and she possibly may not make it so if we ever felt like switching her support of and not put her through this, we could. Everyone has there choices and I understand some parents cant go through seeing there child like that and think there putting them through to much but no chance was I going to give up on my little girl even though it was a low percentage at least she still had a chance!
so me molly's dad and my mam sat beside her everyday in paediatric intensive care day and night willing her on and praying she would make it through, even though she had her eyes shut all the time, we read to her, sang to her , held her hand and talked to her telling her she was going to come home where she belonged.
Two weeks later molly underwent her CDH repair and had her abdominal organs back to there original place now she had room for her lungs to grow we were very lucky because very rarely surgeons who operate on baby's on ecmo with congenital diaphragmatic hernia because the risk is very very high but molly against all odds came out of it safely I couldn't have felt anymore proud of my baby girl.
Then two weeks later after her operation she started improving making steady process came of ecmo alive and didn't need anymore ongoing support from the freeman so she was transferred back to Rvi north children's intensive care and high dependency unit where she was still getting support from her ventilator to try help her lungs she then came of her ventilator and went onto respiratory ward but a week later she deteraited again and needed to go back to intensive care and be put back her ventilator because she caught a lung infection weeks later she was then discharged back onto the ward well enough again but two weeks later molly was then was diagnosed with hydrophalus which meant she had extra fluid on her head which to much could course pressure on her brain so she needed an operation to put a shunt in her head to her stomach to drain the fluid from her head into her stomach she will have that in for life weeks later doctors were saying it was really encouraging molly has gotten this far and started talking about future plans about going home and taken home on her oxygen and be learned how to feed her through her NJ tube and learned how to give her medications through syringes but then molly took bad again and her head became swollen she started acting different she then got took down tk theatre from the Nero surgeons and had to had to undergo another operation because her shunt was blocked, two weeks later she looked well enough and ready enough to come home and now she is home feels two good to be true after all the obstacles she has faced im proud to say she was never alone through all of them I stayed at the sick children's trust accommodations Scott house and Crawford house and they are the most kindest nicest supportive people you will ever meet molly still has her bad days were she's in and out of hospital but she's already came through the worst part and I would just like to share my story for mothers who are going through situation's try and never give up hope because my little girl has shown me anything is possible she was fought against everything that has been thrown at her and even though I know it can be so hard some days I would be scared to walk in to see molly because I didn't know if it was going to be a day with good news or bad news but you have to try stay strong and try and try and have hope your child will make it through surround them with love and hold there hand because they can hear you and know your with them and I believe we're there's great love there will always be great miracle's.
