You do not need to ask about any investigation. If they had any concerns, the child services would have spoken with you directly, possibly even requesting a home visit.

The brain hemmorhage obviously caused significant growth and developmental delays. This is to be expected with a brain hemorrhage. The MRI is a good idea to see if there are any other pressing issues that may be contributing to her delays. After the MRI, and if all is well, then you should talk to your pediatrican about combining some visits to take some stress off of you and your family. Your daughter will need the portage worker and physio therapy to teach her things she would not be able to do on her own. She is still in a critical stage of development. Even though she has had some damage to her brain, it is not all irreversible. Her brain may build new pathways in some areas with aggressive therapy at this age. So these appointments are important, but they may be able to combine them on same days to save you from so much back and forth to the hospital. The appoinments with her pediatrician are still important...not necessarily for the medications, but more for monitoring of her weight. Decreased growth will contribute to her developmental delays. It is crucial she receives adequate nutrition and gains weight. You can ask the pediatrician if you could call in her weights from home every month instead and only come in if the weight stays the same or goes down.

What other type of specialists does she see? If it is just the delopmental specialists, you can talk to them about doing some of the therapies at home either by yourself or ask if they do home visits.

I know it can be frustrating with a child who needs therapy...it is very time consuming and stressful...but keep in mind this is the only time to make a difference for her since her brain is at such a state of fast growth. The older she gets, the slower her brain grows, and the less therapy she will need as it will no longer have the same impact on her long-term health.

Do you have someone that YOU can talk to and who can help you with these appoinments? We all need support as human beings....if you feel isolated or alone, it can make the situation all the more stressful. Let me know and maybe we can come up with a plan to both help your daughter get the help she needs and for you to get some stress relieved.

Kindly,
Nurse Tracy

I can appreciate your perspective. I can only see one reason they would contact social services...for medical neglect. Whether they would or not is very subjective to the doctors treating your daughter. If nothing seems to be helping, then I cannot see why they would report you...unless she has had a significant decrease on her growth curve in the recent past. If there are no obvious signs of declining health, then you have the right to refuse the MRI and other services. Refusing to answer their phone calls however will raise some suspicion. You may want to just answer and tell them that you are caring for her at home.

I wish I could give you a definitive answer, but this is a very gray area in medicine. If they called social services, then you would get a home visit. If all is well at home, then they should have no grounds whatsoever to remove your child. If they want to press the courts to order you to bring your child in for appointments, then they would need concrete evidence that the therapies and appointments are critical to the child's health. In your daughter's case, and with the information you gave me, I would say that the chances of this happening are possible, but very small.

Best wishes for you and your daughter,
Nurse Tracy

Her lack of weight gain will be a factor. I am not up to speed on how the court system works in England and what your healthcare rights are. You should have the right to a copy of your medical records and your daughter's at the time of her birth. Having a lawyer or another doctor review them is the only way to know if they are hiding anything. However considering you had an emergency C-section leads me to believe that your baby was in some sort of distress and the hemorrhage probably occured in utero just prior to birth. But having someone else review the records will be a start to settling this and giving you some peace about it.

Nurse Tracy

All I referred to was that the brain hemorrhage ocurred while she was still inside your uterus (in utero), probably just prior to birth....there are many causes, one being lack of oxygen from the umbillical cord being compressed. If the brain hemorrhage ocurred after she was delivered from your uterus, then there would be other causes. But if she was born with the hemorrhage like you stated, then something ocurred while she was in your uterus. Were you on any medications your last trimester?