Premature Child

Michael was born at 24 weeks, weighing 889.gms or 1lb 15oz, due to complete placenta previa, and ??placental abruption. 

He spent a total of 22 weeks in NICU/SCBU, he spent 3 weeks on an oscilating ventilator, 3 weeks on CPAP before moving to Nasal Cannula, he was 02 dependant until he was 2, but still needs supplemental oxygen on occasions now.

During his stay in NICU he developed Bi-lateral Grade 3 IVH's (Intra-ventricular Haemhorrages) Grade 3 stage 3 ROP (Retinopathy of Prematurity) PDA (Patent Ductus Arteriosus) BPD (Bronchopulmonary Dysplasia). There were some concerns over NEC (Necrotising EnteroColitis) he developed Bi-lateral Ingunial Hernia's (repaired with surgery at 19 weeks) Aortal Septal Defect and Pulmonary Stenosis diagnosed at 12 weeks of age, also did a lot of the other preemie issues such as Apnoea's, Bradys, repeated blood transfusions, Reflux etc....

Moved from Intensive to step down at 10 weeks of age, although did manage to find himself back in intensive @ his due date....frightened me silly! On his due date he weighed 7.5lbs. And looked huge in the NICU compared to the other younger babes!!

Came home at 22 weeks weighing 11.5lbs

Michael has major issues with his lungs and because of this spent a lot of the first 4 years of his life in and out of hospital, with trips to PICU etc because of chest infections, he has a deficiancy @ pneumonia, and due to this gets a double dose of pneumovax, and flu vaccines every winter.....(also needs the pneumovax more frequently, it's supposed to last for 10 years, but isn't likely too with Michael!)

Developed Failure to Thrive because of the lung issues and had a gastrostomy peg fitted at 11 months of age, finally came home for any length of time 2 weeks before his 1st Birthday!!

Diagnosed as Global Developmental Delay @13 months, this dx has now been changed to a moderate Learning Disability.

Diagnosed with Autisitic Spectrum Disorder in Aug 03 aged 3 years and 10 months.

Feeding has long been a difficult area for Michael and one we've had to fight hard to get anyone to do anything....after a lot of tempers and tears, we finally got a dx of Pharengyl stage swallowing difficulties - basically this means that he has an abnormal swallow reflex, and is also known as Dysphagia.

An MRI showed that Michael has white matter damage, and an EEG revealed that he has Bulbar Palsy - nerve damage. We've been told the feeding issues are due to brain stem injury.

Weight gain wise he's now officially fat!  We've been told he will always be tube fed!

Chest wise we're playing a wait and see game!

Apart from that Michael is now attending special needs school for children with learning disabilities and loving it!!

Visit Michael's website here

Jacob was born on July 25th 2003 at 25 weeks gestation.

He spent 100 days in NICU and SCBU and then another 80 in PICU and paed ward. Early issues were a bilateral grade III IVH, 3 x septacamia, staph infections, seizures and BPD/CLD. We then had a struggle with severe RSV which turned into Bronciolitis Obliterans and required an extensive PICU stay.

Jacob came home aged 6 months and remained oxygen dependent until 16 months.

He is now almost 28 months and dx with development delays, myopia and low tone. All in all things are going well and he recently started to walk.

Visit Jacob's website

Siobhan was born by c-sect at 28 weeks, Feb 2000. weighing 1.060 kg.
I was allowed to see her the next day around 6pm and was absolutely horrified...had no idea the ride we were in for.
she was at the remote hospital for 19 days and as her PDA wouldn't close with medication was air lifted to johannesburg (sorry forgot to mention i lived in s.africa at the time) for surgery.this was performed at 21 days old.

Siobhan spent around 5/6 weeks ventilated and was weaned to c-pap on around 3 occassions 1st times aspirated and lung collapsed 2nd time got infection and 3rd time i can't remember.
had about 5 blood transfusions (looked like little devil when they used her head)
rop corrected itself.
I know I've left loads out but hard to remember it all.
was on and off oxygen until about a week before discharge.was discharged 4 days before her due date after spending 12 weeks in hospital.had a's & b's even after discharge and was on a monitor till age 2.

Was in and out of hospital with chest problems till age 3, and still has chronic lung disease.
Has mild cerebral palsy.
Has double kidney on left, and none on right, (not related to prematurity apparently)
had surgery to repair club foot
has had tonsils removed and adenoids removed, - TWICE (they grew back)
has speech problems which she receives therapy for.
has physio for CP
has hearing loss in both ears and will need a hearing aid.
has delayed development due to rocky start to life.
wears a splint on left foot and insole in right.

Visit Siobhan's website here.

Corey was born at 28+5wks gestation by Emergency Caesarian section.

He had always been a very active baby but i just felt as if something was wrong. Mothers instinct i guess. 36 hours passed and i hadn't felt a single movement so i decided to get myself checked out. I rang my midwife who told me if i was in doubt to ring the hospital. I did and they told me to go in and get checked out. I arrived at the hospital and they did a CTG which showed decelerations and no peaks, my baby wasn't active. They scanned me and said he was in a breech position and that was probably why i couldn't feel him. After what seemed like ages i was told to wait outside while they fetched a doctor. I thought this was routine but i was in for the shock of my life. He told me that my placenta wasn't working properly and that the baby was not getting all the nutrients he required, he was therefore smaller than he should be, this is called IUGR. I was to be admitted straight away to keep a close eye on me. They gave me a shot of steroids to develop the baby's lungs in case they needed to deliver, i didn't think for one minute they would!

It was Thursday 13th Nov and i was scared, very scared. I called my husband Dave to tell him but all he could hear was me crying on the other end of the line. I eventually told him what was happening and he rushed to the hospital. I went home and got a few things together and Dave drove me back to the hospital at 5pm.

Over the next 2 days i was closely monitored. On Saturday 15th November as i was having a trace in the early evening the nurse decided it was time to call the consultant to look at it. I asked what was wrong and she said it was very 'flat', i was scared. Never for one minute did i think that anything could go wrong. When the consultant arrived he said they were going to deliver my baby. All i could do was cry. Dave called round family and friends to tell them because i was to upset to speak. I was taken to theatre and had an epidural and at 20:48 that evening my little Angel Corey Owen was born, he weighed 2lb 2oz. He never made a sound. As they wizzed him past i never got to see him but Dave did. I didn't get to see him until the following day. I was taken to HDU as my blood pressure was very high and took a while to be stabalised. I was given medication but i felt awful. I had the most sever headaches you can imagine and i was vomiting. I was later to find out i had a spinal leak from the epidural. I stayed in HDU for 2 days.

He was immediately ventilated as his lungs were very immature and was rushed to NICU. I never got to see him that night but Dave brought some polaroid pictures to show me. He was gorgeous, but i felt so detached. He didn't feel like my baby.

The day after he was born things didn't go too well. They didn't expect him to survive as he had developed Group B Strep and they were having trouble maintaining his BP.They told us to spend as much time with him as possible. Later they suspected he had Pnuemonia. he was a fighter though and managed to pull through. A week after he was born they decided to try him off the ventilator. He only lasted one hour on CPAP before becoming very tired and having to be reintubated. This would continue for 10 long weeks. He has had a very tough road. He has had a Grade 4 IVH (brain bleed), NEC (necrotizing enterocolitis), brittle bones, and a PDA which had to be operated on at Leeds General Infirmary when he was just 8 weeks old. After this operation it was thought he would get better, however things got much worse. Corey went into respiratory failure and had to be put on an Oscillating ventilator and given Nitric to help the blood supply to his lungs. As a last resort he was given Steriods, these can have developmental effects in later life so the decision to give them was not taken lightly. After 3 days of steroids Corey was well enough to come off the vent and onto CPAP. He cycled on and off this for about 3 weeks and then went onto low flow O2. He continued to do well and was promoted to HDU and then 2 days later to SCBU. He was due to come home at the end of March but suffered a setback. After his first set of immunisations he developed a temperature and his blood gases became very poor. He needed much more Oxygen and we ended up back in Intensive Care. The nightmare was starting again. I felt like i couldn't take anymore. They talked about putting Corey back on a ventilator and i was scared that if that happened he would never come off it again. It was decided to increase his steroids and put him on antibiotics as a precaution. After a week in ITU he was well enough again for HDU but it had set us back about a month. After spending a few weeks in HDU we finally came home on the 20th April after 154 days!
Corey came home in 1 litre of Oxygen and NG tube fed.
He required Oxygen until Jan 2005 and NG tube feeding until Aug 05. He is very healthy and very happy. His feeding still leaves alot to be desired but he is putting on weight. As of Dec 05 he is 24lb and 85cms tall. He is delayed in speech and fine motor skills but is otherwise doing really well!

Visit Corey's Website here