Gastroschisis On the 12 weeks scan, Grimsby hospital picked up an abnormality on the scan. Straight away a consultant came in to have a look and informed us that the baby has gastroschisis. We were then transferred to Sheffield specialist. Gastroschisis represents a congenital defect characterised by a defect in the anterior abdominal wall through which the abdominal contents freely protrude. We were informed that we were at the small end of the scale as it only appeared to be one organ on the outside. Part of Mollies bowel! Throughout the pregnancy we had regular check ups at Jessop wing, Sheffield to make sure the baby was growing properly. We couldn't have asked for a better doctor. Mollie's due date was the 3rd August. My date for inducement was the 22nd July. However I started to swell and was rushed to Sheffield by ambulance on Friday 5th July diagnosed with pre-eclampsia. I was put straight on the labour ward next to a lady screaming "help me" (Anyone would think Freddy Krueger was in the room with her) After lots of close monitoring, they was able to keep Mollie in for 3 days until they made the decision to take me down for an emergency section. (Mark shat himself) Mollie was born on the 8th July at 8.09pm. Marks face said it all.. she was perfect! I didn't get chance to see Mollie until the next day as I was not really with it myself! So Mark was back and forth showing me pictures and videos of her. For the first eight days, Mollies bowel was in a bag being pushed down each day until gravity allowed it to go right down. The final part of the bowel was put back by operation. Sheffield likes to deal with gystroschisis this way as it doesn't put as much pressure on the lungs. The operation went very well, no signs of blockage or infection. What we thought was the worst part over, was just the start of our journey. As weeks went on the medical team found it very hard keeping Mollies salt levels down. Her fluids were changed so much but nothing seemed to explain why until Mollie had her eye test. Optic Nerve Hypoplasia  Following a standard eye test when Mollie was 3 weeks old, it was brought to the consultants attention that the nerves in Mollies eyes were very small. This is called optic nerve hypoplasia. This can vary from badly effected (blind) to near normal sight. Me and Mark were told that Mollie's eyes were focussing and that she was re-acting to blight and dim light. This was good that they picked this up and some babies they are unable to tell at this stage. Very good news to us as we knew she was not on the bad end of the scale! We were so happy we knew she had sight, but how badly she was effected we would not know until she was older. So she was having regular check ups. Optic nerve hypoplasia - as the nerves are very small, we do not know what messages were getting back to the brain from what Mollie was looking at. As soon as we knew this, we were told to keep stimulating her eyes. So being a great daddy, Mark took me straight away to buy lots of stimulating eye toys. Kiddiecare became my favourite shop… and Marks worst nightmare! Mollies incubator was full of black, white and red toys! stripes are apparently the best for a child's eyes. As many parents, we did not know that babies can only see these three colours…So unfortunately all of the nice neutral teddies you have at the bottom of your child's bed… pointless because they cannot see them!! Sorry I was bummed about it also! So out was Mollies nice teddies and in with the black and white ones… other parents in the room most probably looked at her bed thinking "What the frick is going on over there..!! but hey at least my child could see her toys!!! " I got very obsessed with Mollies eyes.. I was finding myself wearing black and white patterned dresses, red tops! Anything so I knew she could see me! Mollie even found herself dressed as a little cow! I used to get upset thinking that she couldn't see me, even though babies eyes are still developing until 10 weeks and they don't stop developing until they are 5 years old. When your in that environment, it is very hard not to look for problems! You find yourself comparing your child to others and obsessing over everything. Because of the small nerves, it is normally linked to the pituitary gland. So mollie was referred to the endercrim team. It was found that due to Mollie having optic nerve hypoplasia, this damaged her gland. Absence of the Pituitary Gland. Mollie was under the endercrim team. I cannot tell you how clever these people are!!! They are like the god of the hospital! I feel stupid most of the time, but when your around these people… I just made sure i didn't say anything put it that way! Just sat and smiled… Although Mollie's MRI scan showed that the pituitary gland was present, after lots of tests, it appeared that it was not functioning properly. Therefore lots of hormones were affected by this. DIABETES INSIPIDUS Due to the gland not functioning, Mollie had Diabetes insipidus. This is 5% out of 100 chance of getting. This can be caused by a large operation, a tumour on the gland.. or in Mollies case, born with it. Diabetes insipidus is salt, not sugar! Mollies sugar levels were always perfect. Because the message was not getting from the gland to her kidneys to store water, she was constantly flushing out any fluid she had in. Due to this, her salt levels were too high which can cause seizures. The treatment for this was desmapressin. This helps the body store fluid in the kidneys, diluting the salt.. As you could imagine this was very hard to manage. Mollies dose of desmapressin was firstly given by nasal spray (no she did not like this.. a tube put up her nose and then oxygen shooting the spray up) For some reason she stopped absorbing the desmapressin by nasal and ended up having an injection twice a day (horrible to watch but she didn't cry as much as with the nasal spray) Mollie would be on desmapressin for life however once she started on full milk it would be given by liquid and eventually tablets when she is older which she would have been maintaining herself. HYDROCORTISONE Mollie had tests done to see how much steroids her body was producing. The average baby produces around 500.. but Mollie was only producing 380. Therefore she required hydrocortisone to make sure she has the right amount. As she as given steroids, the body naturally stops producing as it isn't having to make any. So this is another treatment she would be on for life. When you are poorly, the body naturally produces a lot more steroids to help you fight infection. As Mollie's little body was not doing this, me and Mark would have to make sure were giving her more dose. So whenever Mollie was sick i.e cold we would double her dose, possibly triple it if we felt she needed it. If Mollie had diarrhoea and sickness, because she would be unable to keep her medicine down, we would have to inject her with hydrocortisone, call the ambulance service which she was registered under and take her straight to hospital. It was made very clear to me and Mark, that if she wasn't given this injection when poorly… it IS a life or death situation. So as you could imagine, babysitters, day care, school trips, girls holidays were already becoming nightmares to me and Mark!!! THYROID Mollies thyroid was working fine in early test, however as time went on it was noted that the hormone which stimulates the thyroid was not working. Therefore Mollie was started on another medication to keep her thyroid stimulated. Another medication that she would be on for life. GROWTH HORMONE When Mollie turned three, she would start a daily growth injection. I already had this planned out in my head how I would give her this. I was going to get her a little media box and she would give mummy and daddy there injection and then we would inject her with hers. Make it a little game until she got older and decided it was stupid and not playing anymore… Mollie would have been closely monitored to make sure she was on the correct dose for her age. And to make sure she was growing properly. This would stop in her late teens. PUBERTY HORMONES (SEXUAL DEVELOPMENT) When the doctors decided that Mollie should start puberty, they would start her on her hormone medication. I believe that this would be in tablet form… I don't know that much about this as we would have dealt with this when we got there. Mark told the doctors that she won't need these hormones, I don't think he ever wanted her to start her period!!! Poor Mollie, unfortunately Mark, she would have grown up one day! This small gland functions so many parts of the body! Luckily where we are today in technology, we are able to give the body what it would have naturally. We hope this makes it a little clearer to the extent of Mollies condition. Me and Mark were fully prepared to dedicate our lives to Mollie to enable her a "normal" life .. whatever normal is!!