To the nasty people who have called our beautiful daughter a ‘creature’, ‘medusa’ and a whole host of other nasty names, and said that we are egotistical and selfish for having brought Batya into this world, and she and society would bebetter off if she were dead, not born or killed; and to the nasty people that have spent the last week laying into my wife online ….. I will explain in detail our reasons for keeping Batya alive….(by the way… you don’t come up tothe ankles of my wife….you are uneducated, mean and nasty… with no compassion….)
My name is Naphtali Goldman, I am 43 years old and was born and raised in Manchester in the United Kingdom. I achieved a degree in law and an MBA; I am husband to Racheli and father to Batya.
I met the most wonderful young lady called Racheli (26). This girl was not like any other girl I had ever met. Racheli is the most caring, God fearing, honest, pure girl that I have ever met… she has an inner brilliance of good that shines from her being… I watched in awe as I witnessed a kindness and purity of heart that I don’t think really exists too often in today’s world. When I met the family, it was obvious where the education had come from.. These people were just pure, kind, unselfish and believing on just a whole other level…
Being not too daft, I married Racheli in 2015.
After trying for about 2 years, Racheli fell pregnant to our delight. We were finally going to be a real family. I was running a small jewellery shop. The pregnancy was of course exciting but pretty regular; nothing untoward was ever mentioned to us. Eight weeks before full term we went to have a final scan. The doctor hesitated after examining the scan and dropped the bombshell, he said, “your baby is very ill and not compatible with life, I suggest that you abort her as soon as possible.” he continued, “She will make your life difficult, unbearable a burden.”
We thanked the doctor for his advice, and we left his office. We were shell shocked, we were 8 weeks preterm; we had some very difficult decisions to make.
Based on Rachelis’ and my shared beliefs, we decided that we were going to bring this child into the world.
Our thoughts and beliefs were as follows. (I apologize from the beginning.. I really am not trying to sound like a crazy bible basher…)
We both believe in God & the Old Testament; we both try to be fairly religious; We believe that God is perfect and righteous; We believe that everything that God does is good and perfect. We believe that God does NOT make mistakes or errors. We believe that God unconditionally loves all of his children,and that God only ever does anything that is for the overall good of the person and the world, (even if we do not understand it, or even if it contradicts other things we may have been taught or learned), and therefore, based on these ideologies, we decided that God has specifically chosen us to look after this gift in this world, for the good of us, the child, and the world as a whole. We decided that we would not look at this child as something negative or lacking,just because she may have a different spine, or be blind or deaf or have a different head, and not conform with regular westernized standards…. this child would come into this world for a reason decided by God in the way that God had created her, for His purpose; If she survived.
In addition to the above, we dismissed the idea of aborting based on another 2 reasons. Firstly, there is a very definite question as to whether the killing of a baby at this time in a pregnancy (7 months) is murder or not. Secondly, by us intervening in God’s plan we are in essence saying that in our proud opinion, we think that what God has decided is actually wrong.
It is important to add at this point that we believe that one must always do the absolute maximum to keep a sick person / child alive, this is NOT intervening in God’s plan and does not contradict the above statement. GOD made these tools around us to use. He created doctors, ventilators, blood transfusions etc…. Our belief based on the Old Testament is that if tools are available then they must of course be used. However, if having used all available options, God decides that He wishes the soul to return to Him, then of course this is His will.
Batya could easily have died many times…we are sure that God has a reason for Batya being here.… (of this we have absolutely no understanding , however we accept it lovingly and with dedication…) for the benefit of His perfect plan;
He has entrusted her to our safekeeping, and we decided that we would try to look after this child, to care for her, love her and give her the absolute best that we possibly can. We see it as a blessing and a privilege! To have been sent this child.
We knew this was going to be seriously challenging. It was going to be life changing.
At this point I must add that we do not think the ideologies of some of the commentators to the post regarding quality of life or value of life are correct. They are in direct contradiction to our ideologies. The posters ideology is that if a person can’t go to the mall, have kids, go to college or live what is considered a normal or active life then that life is not valued, and the world would be a better place without these kinds of people. From our perspective ALL life is valuable no matter what. Would you kill a pensioner who is suffering from Parkinson’s or Alzheimer’s… would you force people who know their child is Down syndrome, blind or perhaps with a limb missing to abort? Perhaps you would like all people living in third world countries to be sterilized (we know well beforehand that these kids are going to have difficult lives and the mortality rate is sky high ); I know that you will say… no this case is different… in this case Batya has massive medical issues…you are correct…but life is life no matter what… we believe that God knows exactly what he is doing…it is called belief in God…In the posters opinion, he/she claim to be on a par with the intelligence and understanding of God. In some cases they believe that they are MORE intelligent than God and understand the world in its entirety.. In the posters opinion….he believes that Gods decision is wrong, and his simple human decision and thought process is correct…..(By the way this is not possible… in the same way a monkey cannot understand a human, a human cannot understand God… we are different species…and it would take a very proud man to say he understands God’s thoughts,actions and decisions.
So this argument boils down to belief in God or not. We believe in God, and we believe His decision overrides and is more valid than a human beings simple ideas or reasoning…… and for those of you out there that don’t believe… I am so sorry for you…
Onthe 3rd of January this year Batya Hannah was born. It was a difficult labor for Racheli because Batya didn’t really have the strength to help push herself out. As soon as she was born, we could see that things didn’t look quite right. Batyas’ head was misshaped, her spine wasn’t straight and her eyes were bulging. The doctors rushed her to intensive care to assess the situation.
We spent 3 months in intensive care by Batyas side whilst she fought for her life.We never left her for one moment. She was resuscitated 5 times, but she fought,and after 3 months she stabilized.
Batya was now diagnosed with 2 very rare syndromes Antley Bixler Syndrome and Pfeiffer Syndrome. There are less than 35 reported cases of Antley Bixler Syndrome since 1975.
Batya was fully mechanically ventilated and in need of full time intensive care treatment. The hospital said that we had 2 options. The first was to send her to a ‘home’ for ventilated people, and they would take care of her, there was restricted visiting hours etc… The second was to take her home and look after her ourselves.
This was a decision that needed to be made too..
We made this decision based on the following. We felt that sending Batya to a home was not right for several reasons. Firstly we felt after visiting the care home, that the level of care that Batya actually required would be totally unfeasible for the care home to carry out. Batya requires about 80 procedures per day to keep her well and stable, in intensive care she required 1 nurse between 2 patients, in the care home there were 3 nurses to 20 patients. We weren’t happy that after evening time there was no possibility of visiting, .…..and all our doctors (most of all whom wanted Batya to live), said, “if you want to kill her, send her to a care home, they don’t do suction on time..”,With Batya there are no second chances, she is fully ventilated, and she has a tiny airway cannula that blocks very regularly. This requires quite a complicated sterile suction procedure to clear the airway. If this airway is not cleared properly or on time, Batya would simply pass away – this happens 10– 15 times every 24 hours…. As a result of this she really needs 24 hour monitoring. We felt Batya would be lonelier, and less stroked, less held, less loved, less gently cared for, less played with, less stimulated and interacted with. I think it’s the same with the elderly once they go to a care home, I think they lose the will to live. These are purely my humble and not substantiated thoughts. I just think she would be lonely and sad.
In a home environment we can stroke her, gently and patiently care for her, love her around the clock. (we’re awake anyway….) all in a home environment where the child has two loving patient people caring for her.
We would need to undergo intensive training to be able to look after a fully ventilated child in a home environment, and we knew that looking after a child such as Batya was going to cause massive changes in our life. (including work,finances, the ability to go out for an evening together, and full time round the clock care to name just a few of the challenges that we would face.)
We decided based on our ideology the following.
Firstly, GOD has entrusted this gift to us in his wisdom and goodness, and as I have written above, all that GOD does is righteous and perfect and for the benefit of the world.
Secondly if we had to decide between what we felt in our opinion was being ‘mean’ or being ‘charitable and kind’ to our daughter, then we would choose the charitable and loving option.
It would have been an easy call for us to have her put into a ‘care home’. She would be cared for by a team to the minimum level, and we could continue to enjoy our life selfishly together going on holidays, working, going out to eat etc… however we thought that she would be lonely, sad, scared, less cared for,less loved, less interacted with than if she was in a home environment.
We felt that we would not be at peace with this decision. We felt that every child deserves a warm, loving, caring, patient home, however sick the child may be. (Especially if the child is very helpless)… Batya is blind, deaf, fully ventilated… she doesn’t make a noise when she cries… so it is really difficult to see when she is in distress…
We felt simply that the choice to send her to a care home was the easy, selfish, route which would ultimately cause Batya to lose her will to live (we are not judging anyone who decides to go down this route… every person must make their own decisions in life as to what they think is correct…); and we felt that if we surrounded her with love and the best possible care then she would be happy and content for the time she would be in this world.
So the choice was quite simple for us; it was a choice between kindness, love and care on the one side, and selfishness and uncaring behavior on the other side.
Based on all of our beliefs as a religious couple trying to live their life in the way of GOD based on the Old Testament; a fundamental cornerstone is that we believe in kindness rather than selfishness…even if the price was going to be seriously heavy…
We decided that we would not offload this job onto a third party whom we thought would do a less good job with Batya purely for our own convenience.
We knew that there would be massive challenges including financial burdens, family stress, a mammoth amount of work, a huge change in our lives… but we also believe that when you go in the way of GOD with a true heart… He assists you along the way.
So, now we have Batya at home; we care for her 24 hours a day, we carry out about 80 procedures a day, I do midnight to midday and my wife does midday to midnight; we try to do them gently and patiently and in the best way that we can. We hold her, put her in her baby swing, try to stimulate her a little, but most importantly, stroke and kiss and spend time with her so that she isn’t all by herself in her cot being scared or lonely. Batya can’t see or hear, she does however have a very acute sense of touch… she uses her hands to feel around and touch things. Batya needs 24 hour monitoring because her favorite hobby is pulling out her ventilator tube…she seems to find it quite amusing… however it can be fatal…she also needs constant monitoring to see if she requires suction; this is probably our most intensive task.
We look after Batya with love and care to the best of our ability. Batya has survived significantly longer than any prognosis the doctors gave to us. 80% of children born like this die within 12 weeks. Batya is now 11 months old, she smiles the most beautiful smile you have ever seen.. she holds your hand so tightly, she looks so content and happy when she is held and stroked and kissed.. there really are a million beautiful moments….
I would love you to look at this clip before continuing to read…
We think up until now we are doing a pretty good job. Batya is happy and content, well cared for and loved. She is of course very very not well, but we are making the best with what we have. We do of course have good days and bad days with her… we have had to perform full life resuscitation twice since she has been home, and we spend a lot of time in hospital with her having procedures and tests to keep her stable and well.
At this point I must add that for some reason doctors believe that they are God. They believe that they can decide and advise on what life is worth living (according to westernized accepted standards), and who should die…. Who gave these regular human beings the ability to understand Gods decisions and plan…In their humble human opinion.. (which in my opinion is worth nothing !) they have decided and educated the western world as to which life is worth living and which life is not ! I do NOT agree with this… and think doctors have no more rights to decide or advise parents whether to deliver a child or abort…the job of the medical team is purely to deliver and to medicate and treat.. NOT to advise on complicated moral ideas ! More often than not… the medical world sees these children as a burden on society… however… doctors are just humans (glorified plumbers and electricians )… we think that they are in essence saying God is mistaken in his actions and the doctors know better… what a load of rubbish !!!!
We have both had to give up our jobs to care for Batya. I had some savings, however not having worked for 11 months has basically depleted all of them. We live in rented accommodation and we do not have a car. I know this sounds a bit crazy… but we are really quite happy and content, just a little tired. We love Batya, we believe in what we are doing. We are worried of course because the financial burden is great. I get $1730 per month from the government to take care of Batya. They also provide us with the equipment to keep Batya alive..(ventilator, oxygen, suction machines, catheters, syringes etc..), some of her medications and a specialist pediatric intensive care doctor that visits when we need her; she is a specialist in fully ventilated infants and a physiotherapist.
So we have $1730 usd to cover all expenses per month including rent… I have covered the shortfall up until now with my savings and help from family members and friends. (PEOPLE WHO AGREE WITH WHAT WE ARE DOING AND SUPPORT OUR ACTIONS AND IDEOLOGIES.)
Our expenses are great, for example, we need to keep Batya at a very specific temperature so the air conditioning must be on 24/7, she eats a very specialized food that costs about $400 usd per month (monogen).
We should really be using closed suction catheters rather than open catheters (the ones the government provide) for performing suction. It is absolutely proven that closed suction catheters prevent pneumonia in ventilated children. The government does not think this is necessary so we would need to buy them privately. Each catheter costs about $13 usd, and you need a new one every day. That’s $390 usd per month just on catheters.
There is so much equipment that we really should have that isn’t provided. The bed she sleeps on is a regular cot. She needs a very specialized bed and mattress. Specialized bathing equipment, specialist buggy to move her around in with specialist supports, a specialized seat for her.
We could really use some professional help to cover night time. What we would like to do is to try to return a little to a slightly more normal life. We would like to employ a person who can perform suction and give medications and monitor Batya from 12:00 am until 8:00 am. This would considerably reduce our workload and allow us to go to sleep together at night. In the event of an emergency we would be woken and would handle the situation. This would not unfortunately allow us both to leave the house together. The only time we could really leave the house together is if we had a fully trained intensive care nurse or doctor looking after her. Batya has needed lifesaving resuscitation since she has been home. Employing a nurse or doctor to babysit so that we can go out for an evening would just be prohibitively expensive. To enable me to go to work would require 8 hours care cover during the day which would cost more than I would earn.
All of these things above… really the government should pay for, (in our opinion)…however we understand that they choose not to (based on their secular ideology). We are only appealing for assistance from people who actually agree with the actions that we have taken, people who believe in God, people who believe a cash value cannot be put on a life, even a life for a couple of minutes…. (in our humble opinion… one moment of life is better than no life at all).
Our faith keeps us strong as does our belief that what we are doing is correct whatever the sacrifice or difficulties (we falter sometimes…it is pretty stressful); people around us have been amazingly supportive and kind. We stand for kindness, love, unselfishness and following in the way of God.
So this request is to ask you to be a part of something good and kind and to help us to care for Batya in the best way that we can… to give her the best that we can for however long she is with us…God’s will is that he still wants her here in this world, we are looking for partners to help in her care and share in this good deed that we are doing. We believe Batya deserves life, love and the best care that we can give to her.
Thank you for the time that you have taken to read this message. A link to the original post on Facebook
To see our fundraising page https://www.gofundme.com/helpbatya